Welcome! We appreciate your comments and suggestions!
Be sure to post your introduction and ask those important questions at the Family-to-Family Connection or one of our other web-based forums!
Cleft lip and/or palate is the most common birth defect in the United States according to the CDC.
Complex craniofacial conditions, including Crouzon, Apert, Goldenhar and Treacher Collins syndromes,
are more rare but can be life-threatening.
The AmeriFace Guestbook is subject to the same guidelines as all our on-line forums. Inappropriate posts will be removed by the administrator.
Name | Ezra Top |
Homepage | |
State or Country | Italy |
Comments | Visit my top list called Ezra to find very interesting sites about spirituality. From time to time we organize competition with great prices. |
How did you hear about AmeriFace and its support programs? | other site |
Date | 28-09-2017 |
Name | Erica Sifuentes |
Homepage | |
State or Country | Austin, Texas |
Comments | Mom to a 15 year old daughter who was born with a bilateral cleft lip amd palate. |
How did you hear about AmeriFace and its support programs? | stumbled online...thankfully |
Date | 3/24/2014 |
Name | Christy |
Homepage | |
State or Country | Germany |
Comments | My son born on 20 Oct 2013 in Germany has a cleft palate amongst many other medical issues. I am active duty and looking for other military families for support. |
How did you hear about AmeriFace and its support programs? | I googled military families with cleft palate babies |
Date | 14 March 2014 |
Name | Vickie |
Homepage | http://www.locksmithtoronto.com/ |
State or Country | Canada |
Comments | I have absolutely no first hand knowledge of what it's like to live with the disfigurative conditions listed on your web site. I just wanted to say that I am happy that your organization exists to help those less fortunate souls living with this. |
How did you hear about AmeriFace and its support programs? | |
Date | 30-10-2013 |
Name | Paul "Billy" Wolfe |
Homepage | |
State or Country | New Jersey |
Comments | As a CleftAvocate I enjoy assisting families, getting through the red tape of seeking professional help. If you do not make contact, we can not help you or your child get the right treatment! There are alot of people out here to help you. All you have to do is find us on your state resources page right now. We're here to help you, all you have to do is find one of us to make contact. Paul William Wolfe CleftAdvocate 23 Years New Jersey & Pennsylvania Former Road Manager Jackie Wilson Rock & Roll Hall of Famer Vice President-Operations Bill Haley's Comets, Inc. |
How did you hear about AmeriFace and its support programs? | Debbie Oliver |
Date | May 17, 2013 |
Name | Kami |
Sharp | |
Homepage | |
State or Country | missouri |
Comments | My son, Cameron was born 12/09/06 with bi-lateral cleft lip and palate. He had all his surgeries at ssm Cardinal Glennon by DR. Carstens who did a wonderful job!!!!! |
How did you hear about AmeriFace and its support programs? | my son was born with bi lateral cl&p |
Date | 04/03/2013 |
Name | Gelinlik |
Homepage | http://www.gelinlikankara.info/ |
State or Country | Europe |
Comments | I'm studying in university. I have a cleft lip and I have to wear glasses. I recently had an operation to get a bone graft. Soon i'm getting an operation to make my scar better. It's not easy having one.If a boy ever tells you you're ugly they're just too shallow and don't deserve you. |
How did you hear about AmeriFace and its support programs? | |
Date | 10.9.2012 |
Name | Stella King |
Homepage | http://www.pbase.com/stella97king/cleft_lip |
State or Country | usa |
Comments | See my site from birth thru 10 years of age..for Cleft Palate http://www.pbase.com/stella97king/cleft_lip |
How did you hear about AmeriFace and its support programs? | interent |
Date | 7/8/12 |
Name | Breanne Budd |
Homepage | |
State or Country | Montana |
Comments | My son was born in 2011 with Goldenhar Syndrome. It hasn't affected anything but the left side of his face which also affects the chewing and swallowing but we are doing therapy to help with it. He will have to have check-ups for his eyesight and hearing periodically so I am praying everything goes smoothly down the road. |
How did you hear about AmeriFace and its support programs? | Research |
Date | 7-5-2012 |
Name | teresa weidenbacher |
Homepage | |
State or Country | USA |
Comments | Hello Im a newborn intensive care nurse for 30+ years. I'm now doing international surgical missions for orphanage kids. Mostly facial surgeries. Any one have used or new haberman or pigeon spoon feeder bottles to donate? the kids need to get nice and healthy for surgery first. |
How did you hear about AmeriFace and its support programs? | browsing on line |
Date | 12/28/2011 |
Name | June Eden |
Homepage | |
State or Country | Arizona |
Comments | My husband has Treacher Collins Sydrome and so do both of our kids. A 7 year old boy and a 2 year old daughter. I am looking for someone who knows how i can get help paying medicial bills. if anyone one knows please email me mysticalshower@hotmial.com or find me on facebook JuneEden |
How did you hear about AmeriFace and its support programs? | |
Date | 10/6/2011 |
Name | Jenn |
Homepage | |
State or Country | AZ |
Comments | I was born with a complete UCL, surgically repaired in 1967 & 1970. My friend's nephew was born yesterday with CLP and Chromosome 3 Syndrome, he may not survive. Praying for family. |
How did you hear about AmeriFace and its support programs? | Research |
Date | 10.05.11 |
Name | Kris Tucker |
Homepage | |
State or Country | GA |
Comments | Wow never knew this was here...my daughter has Golden-Harr Syn... She is 10 and doing well in school however it seems she is starting to have difficulty with her peers.. I'm thinking about counseling for her and or me... Just don't know if I'm doing or saying the right things to advise her... She's had 6 surgeries so far but they are starting to take their toll on her confidence. I knew this day would come with the unfiltered comments from children's mouths...how can I bolster her confidence??? |
How did you hear about AmeriFace and its support programs? | Surfing |
Date | Oct 2,2011 |
Name | James Kane |
Homepage | |
State or Country | Wisconsin, USA |
Comments | I'm a 37 year old with Bi-lateral Cleft and looking forward to helping other families and kids learn of the great life they have before them :) I made it through some of the hardest times only to realize what a gift I have been given. |
How did you hear about AmeriFace and its support programs? | cleft Advocate |
Date | 8/28/2011 |
Name | Megan |
Homepage | |
State or Country | Bolingbrook, IL USA |
Comments | I have a 16 month old son, Jesse, who was born with a unilateral cleft lip and a cleft soft palate. Both have been repaired. I am a Pathfiner Coordinator in Illinois. |
How did you hear about AmeriFace and its support programs? | social worker that visited me at the hospital |
Date | 8/12/11 |
Name | Karsten |
Homepage | http://www.kaeuferportal.de/solaranlagen-kaufberatung/photovoltaikanlagen-foerderung-138 |
State or Country | Germany |
Comments | I will donate soon. Great site! |
How did you hear about AmeriFace and its support programs? | Google search |
Date | 9.08.2011 |
Name | Corey Wyman |
Homepage | |
State or Country | NV |
Comments | Debbie Oliver is an incredible determined, caring and loving human being and it shows in all she does and says. Her constant efforts is forever changing lives. Without her changes would never happen for so many of us. I am truly humbled. Thank you for being a voice for us all. Debbie you keep us all inspired for the gift of purpose. You are truly one of a kind and a blessing for us all. |
How did you hear about AmeriFace and its support programs? | and then there was A newspaper article |
Date | 7/18/11 |
Name | John Douglas |
Homepage | www.johndouglasjr.com |
State or Country | WA |
Comments | I was born with cleidocranial dysostosis in 1963. I have had difficult challenges and was able to overcome some, though new challenges are appearing. I am a gifted musician, but may be losing my ability to play. I am a recent graduate of an Associates of Applied Sciences degree that took a lifelong struggle to acheive. I have become a manager on a couple of occasions and now struggle to get a job - I think from the economy, but some because of my appearance; not terrible, just different. I did buy a house a few years ago, but my family and I are about to lose it. I am glad to finally find that there are support groups, and that there are advocatesto help those with the problems that I have experience, and I know that there are many that deal with far more than my experience. Even though I was told that I would die in my twenties (told to my mom by a doctor in Alaska when I was very young - maybe it was in Nebraska), I was determined to become as normal as possible; I believed that I could be every bit as good as anyone else, and for the most part, I was able to pull that off with many successes. The greatest is becoming a live performing musician, though my greatest activity was several years ago. Thank you for your contributions and service! John Douglas |
How did you hear about AmeriFace and its support programs? | Google Search |
Date | 06/08/2011 |
Name | betty |
Homepage | |
State or Country | Austria |
Comments | We need more basic medical research into developmental defects. |
How did you hear about AmeriFace and its support programs? | |
Date | 25/5/2011 |
Name | Valerie |
Homepage | |
State or Country | Maryland, USA |
Comments | I am looking for a support group in Montogmery county Maryland. Please email me if you know of any. My son is 8 months old and has PRS. Thanks and bless all. |
How did you hear about AmeriFace and its support programs? | WEB |
Date | 5-18-2011 |
Name | Beverly |
Homepage | http://www.brasilbeautycosmeticos.com.br |
State or Country | Brazil |
Comments | Nice site. |
How did you hear about AmeriFace and its support programs? | |
Date | 05-01-2011 |
Name | Debbie Oliver |
Homepage | http://www.ameriface.org |
State or Country | Nevada |
Comments | July is National Cleft & Craniofacial Awareness & Prevention Month (NCCAPM), recently recognized by the National Health Information Center (NHIC) for inclusion on the National Health Observances Calendar. The site will highlight the alliance of organizations supporting various congenital and acquired cleft/craniofacial/facial differences. NHIC will include the information on their website upon launch, scheduled for May 1, 2011. Please participate! Join the Facebook page and download and use the logo or icon to spread the word! http://www.facebook.com/nccapm To have your organization or team listed at launch so others may find you for information, support and fundraising purposes, complete the short form here: http://nccapm.org/addorg.html |
How did you hear about AmeriFace and its support programs? | I am the Founder of cleftAdvocate and the Executive Director of AmeriFace |
Date | April 21, 2011 |
Name | Ross P. Coltrane |
Homepage | |
State or Country | USA |
Comments | Thanks for an excellent site!! ross.p.coltrane@gmail.com |
How did you hear about AmeriFace and its support programs? | |
Date | Today |
Name | Kato |
Homepage | |
State or Country | Australia |
Comments | I'm in highschool. I have a cleft lip and I have to wear glasses. I need to get braces soon, I recently had an operation to get a bone graft. Soon i'm getting an operation to make my scar better. It's not easy having one.. but I have good bffs who don't care, if a boy/jerk ever tells you you're ugly they're just too shallow and don't deserve you. |
How did you hear about AmeriFace and its support programs? | yahoo answers |
Date | 15 March 2011 |
Name | Renee Swain |
Homepage | |
State or Country | Texas |
Comments | My daughter was born with both cleft lip and pallet. She had her lip fixed in Oct. 2010 and just had her pallet fixed on Feb. 17, 2011. |
How did you hear about AmeriFace and its support programs? | Baby Center .com |
Date | 02/20/2011 |
Name | Robin |
Homepage | |
State or Country | California |
Comments | I have a unilat cleft lip without palet complications. I also have Gorlins syndrome. I am 35 years old and just realizing the syndrome and cleft are linked. Wondering if my Hashimotos Thyroiditis is related too. Getting overwhelmed with health issues stacking up and how to manage and keep on top of dealing with more cysts. |
How did you hear about AmeriFace and its support programs? | cleft club |
Date | 01/28/11 |
Name | Lynda |
Homepage | http://societyfordaintydamsels.wordpress.com |
State or Country | US |
Comments | IMHO the design and the fact your promoting cleftadvocate, facial differences is very noble. I was born with a unilateral microform clef lip. aka minicleft. |
How did you hear about AmeriFace and its support programs? | Yahoo cleftclub |
Date | 1/22/2010 |
Name | Jeff |
Homepage | http://nutramigenbabyformula.com |
State or Country | new jersey |
Comments | I thank god there are people out there that are helping people. You continue to do great work and may god bless you all. |
How did you hear about AmeriFace and its support programs? | |
Date | 1/19/11 |
Name | F. Ed Knutson |
ed at voiceopolis dot com | |
Homepage | www.voiceopolis.com |
State or Country | USA |
Comments | I was born in Columbus, Georgia in 1956 with a cleft lip. I had an exellent repair done before I was adopted at the age of 3 years. I have a scar, and have always worn a moustache since I could grow one. I was embarassed in 6th grade by a teacher who used no tact in pointing out my condition to the entire class. Now I am involved as an actor, and voice-artist, narrator, and radio host. I love what this Ameri-Face is doing for children! |
How did you hear about AmeriFace and its support programs? | |
Date | 2010-December 17 Thu |
Name | Paul William Wolfe |
Homepage | |
State or Country | Pennsylvania USA |
Comments | One of the strongest links to getting any amount of assistance, as well support concerning the cleft palate/lip issue. Are the many pathfinders, in each state that can and will never be afraid to offer any parent-school teacher-or the general public to answer their questions. We are here to help and assist, so please reach out and touch us with your questions. Paul "Billy" Wolfe Pennsylvania Cleft Advocate Sharmokin Dam, Pennsylvania paulwwolfe@yahoo.com |
How did you hear about AmeriFace and its support programs? | Ricki Lake |
Date | December 5, 2010 |
Name | Sue Navarro |
Homepage | |
State or Country | NV |
Comments | I was born with a cleft lip and cleft nasal deformity. My son was born with a cleftlip and palate. This organization rocks without them my son would have had a feeding tube put in because nobody knew how to feed him not even the nurses. Then I was visited by a CleftAdvocate who showed my how to use the bottles and hold him for him to eat. Thank you Debbie and Monica. |
How did you hear about AmeriFace and its support programs? | A social worker in the hospital. |
Date | 10/16/10 |
Name | Katie Jones |
Homepage | http://www.facebook.com/?ref=home#!/profile.php?id=1050043472 |
State or Country | Indep. MO |
Comments | I have a baby boy that is 3 months he has cleft lip and palte i am try to meet familey that are near me |
How did you hear about AmeriFace and its support programs? | |
Date | 10/5/2010 |
Name | Kim Chaney |
Homepage | |
State or Country | Polk County Florida |
Comments | I have Arhinia, which means I was born without a nose. I did not let that get in the way of my life. I am a working professional. I give credit for my drive and perserverance to my facial "uniqueness" . |
How did you hear about AmeriFace and its support programs? | Surfing the web |
Date | 9/30/10 |
Name | Michael Everitt |
Homepage | |
State or Country | West Mids, UK |
Comments | Hi, my name is Michael Everitt and i am 31 year old male, i was born in Walsall, nr Birmingham, England in 1979. I have Crouzons Syndrome and have had many operations throughout my early life up until my late teens when i decided enough was enough and wanted to get on with my life. I also suffer from a skin condition called acanthosis nigricans which a common partner of the crouzons. Life hasn't been easy but i can't complain i have a very loving and supportive family and have always tried not to let it get me down and tend to think that their is always someone less fortunate than myself. If anyone in the same situation wants to contact me please feel free. |
How did you hear about AmeriFace and its support programs? | |
Date | 18/08/10 |
Name | Debbie Oliver |
Homepage | http://www.ameriface.org |
State or Country | Las Vegas, NV |
Comments | Support AmeriFace and its family of programs like cleftAdvocate, GSSN, CSN and the Pathfinder Outreach Network by voting for us TODAY and EVERY DAY through 08/21/10 in the APX Gives Back $100,000 grant program! http://www.facebook.com/apxalarm?v=app_121215224555298&ref=mf And follow us on Facebook! http://www.facebook.com/profile.php?id=686459739#!/pages/AmeriFace/111512022228630?ref=ts |
How did you hear about AmeriFace and its support programs? | I am the Founder of cleftAdvocate and the Executive Director of AmeriFace |
Date | 06/30/10 |
Name | Deji V. Fashemo, DDS, MPH |
Homepage | www.4dorthodontics.com |
State or Country | TX |
Comments | Fellowship-trained orthodontist for children, adolescents, and adult patients, with special interest in multidisciplinary care of persons with cleft lip / palate, other craniofacial conditions (both congenital & acquired), and persons with straightforward and complex orthodontic / craniofacial / surgical needs. NAM services provider. |
How did you hear about AmeriFace and its support programs? | ACPA |
Date | 6/28/2010 |
Name | Kristine Caster |
Homepage | |
State or Country | New Hampshire |
Comments | I am a very proud parent of a child with an incomplete unilateral cleft. He's an inspiration to me! |
How did you hear about AmeriFace and its support programs? | I looked up NH Cleft and was redirected |
Date | June 9, 2010 |
Name | Katie Kahler |
Homepage | |
State or Country | California |
Comments | I just gave birth to my second son, Noah Frank, who was born with a posterior cleft palate. This site is inspirational. |
How did you hear about AmeriFace and its support programs? | |
Date | 5/29/2010 |
Name | Melanie Blackburn |
Homepage | |
State or Country | North Carolina |
Comments | My son Joshua was born with a cleft lip/palate. He is 5 years old now and is so handsome. He is doing well and adjusting well to school. Good luck to all families. |
How did you hear about AmeriFace and its support programs? | internet |
Date | May 27 2010 |
Name | Guber Hocker |
Homepage | |
State or Country | NM |
Comments | Just checking the web |
How did you hear about AmeriFace and its support programs? | Web search |
Date | 5/8/2010 |
Name | Leota D. McIntyre |
Homepage | |
State or Country | South Carolina |
Comments | I am a bilateral cleft lip & palate female with all of my surgeries behind me. I am very fortunate to have had a mother and family who gave me the stamp of approval with love and support growing up. I was 2 days old when I had my first surgery and 3 years old when my palate was closed. My mom told me the story that when I was only 2 months old her father’s good friend who was a minister and lawyer prayed over me for God’s blessings to be upon me throughout the days of my life. As a child, I did not have the bone graft that many children now have by the time they are 9 or 10 years old to allow the wearing of implants. I wear a partial, but inquired several years ago about getting implants for my front teeth. The oral surgeon I consulted took a facial and head image to determine whether I was a candidate or not. Final outcome was I had such advanced bone loss that implants were not advisable. Yes, I was completely disappointed; however, I continue to wear partials even though they can be quite costly every 5 to 6 years to replace since insurance refuses to pay if less than 10 years old, but it could be worse---what if I couldn’t wear a partial to replace the 6 missing teeth! My life is blessed with partials, and my prayer for the disfigured is that God will give strength to overcome obstacles and to face the challenges in life because that is what gives us inner strength to be strong so that we may be of help to others. I would like to hear from you if you would like to correspond. My email is leotamcintyre@charter.net |
How did you hear about AmeriFace and its support programs? | I have known for many years. |
Date | May 5, 2010 |
Name | rishikesh khiste |
Homepage | |
State or Country | India |
Comments | I Have 1 Daughter, Anushka rishikesh khiste. She Is 4 Years Old. She Have Same Cleft Left & Pallet Problem. His Surgery Is Completed With The Help Of Smile Train In Poona Hospital In Pune, Maharashtra.Plastic Surgen Is Mr. Shrirang Pandit. We Started Speech Therapy From Last One Year.Prononsation Is Not Coorect.So Pls. Give Me Detail Information About Speech Thearpy. Also All Information About Cleft Let & Pallet From Bottom To Top. |
How did you hear about AmeriFace and its support programs? | My Daughter Have Same Problem. Operation Is Done With The Help Of Smile Train |
Date | 05.03.2007 |
Name | donna |
http://donnna.com | |
Homepage | |
State or Country | roseville |
Comments | I support cleft advocate |
How did you hear about AmeriFace and its support programs? | search |
Date | 03-19-2010 |
Name | Vickie |
Homepage | |
State or Country | West Virginia |
Comments | Thanks for just being here at 2am in the morning when I just needed someone to talk too. My prayers are with AmeriFace. Thank you, Vickie |
How did you hear about AmeriFace and its support programs? | just surfing looking for answers |
Date | Feb.21,2010 |
Name | Debbie Stevens |
Homepage | http://www.deliberatelydebbie.com/index_1.htm |
State or Country | Australia |
Comments | This is a wonderful site doing amazing things! Happy to support another worthy cause, you guys rock! |
How did you hear about AmeriFace and its support programs? | Friends With Painted Faces |
Date | 3rd February, 2010 |
Name | Jan |
Homepage | |
State or Country | MI |
Comments | I am searching for help. I am 54 yrs old in need of a bone graft. I have a rt sided cleft lip/bone. Because of extensive bone loss partially due to the fact I was missing a tooth and decay became a problem around the caps I wore for many many yrs. I am out of my mind trying to find a way to get this bone graft which will be done in the hospital. I feel this congential defect should be paid for so that I could get some implants. Needless to say, life is difficult enough as I am now widowed and do not have 20 thousand to pay for bone graft. I ask anyone to reach out to me if you know what I should do/can do? It just doesn't seem fair if it is cogential. I could understand if it was purely out of vainity but it is not. Please write me if you have any info. Thank you so much. Jan Sheen43@aol.com |
How did you hear about AmeriFace and its support programs? | web |
Date | 1-28-10 |
Name | Nora Tellez |
Homepage | |
State or Country | U.S.A. |
Comments | Thank you so much for having this website with great information and resources. I'm a proud mom of a beautiful cleft palate baby girl(Ciara Gunning). As soon as she was born back in July 2009, the cleft was discovered and has been a learning experience. My employer and my insurance rejected Ciara for coverage, we ended up in the Channel 2 news (Chicago) to get help and Ciara is now under the care of Shriner's Hospital in Chicago. After the interview, I was guided to check this awesome website and it became very important since I been trying to cope with my daughter's health, nutrition, feeding and also learn about resources. Today she turns 6 months old and yesterday we were seen at Shriner's Hospital in Chicago. There many UNKs and this website has just brought alot of positive. My heart and prayers goes out to all the parents that have to find out and endure that something is wrong with their little ones. Thank you for providing vital information and support. Our family is very greatful for all the great information, support...thank you!!! "Mother Battles City To Cover Baby's Medical Bills" http://cbs2chicago.com/video/?id=65474@wbbm.dayport.com |
How did you hear about AmeriFace and its support programs? | Friends |
Date | January 14, 2009 |
Name | Ollie |
Homepage | www.specialeducationneeds.info |
State or Country | UK |
Comments | Hi guys, Great website!There are so many great communities out there, I run one myself called www.specialeducationneeds.info which provides all kinds of useful information about speech therapy, sen, dyslexia, sensory rooms, autism and other forms of disibility.We would love to hear from some of you. We have just published a post about a brilliant peice of software called Visual Voice Pro. It looks great for people working with SEN, Speech Therapy, and other kinds of therapy in sensory rooms. Thanks and keep up the good work! |
How did you hear about AmeriFace and its support programs? | |
Date | 04/12/2010 |
Name | monica richie |
Homepage | |
State or Country | nevada |
Comments | im glad to have found this place. my husband is 48 years old and has treacher collins syndrome. we were wondering if there was a group for tcs in our area to meet others with tcs. since my husband is 48 with tcs he has alot to offer families with younger kids ect. what his life has been like so far with tcs, and to offer support to others. |
How did you hear about AmeriFace and its support programs? | computer |
Date | 11-09 |
Name | Melissa Stout |
Homepage | www.carepages.com/carepages/RubysExternalMidfaceDistraction |
State or Country | Sparta, MI |
Comments | I have already got a profile on carepages. |
How did you hear about AmeriFace and its support programs? | looking up Lefort III RED Searching for more answers. |
Date | 11-19-09 |
Name | Andrea |
Homepage | |
State or Country | Texas |
Comments | Was born with Cleft/lip/palate Thank God my father was in the military I had wonderful doctors who treated me. In fact one of them COL.Gruber had traveled all over the world teaching other doctors to provide service for kids born like myself. I am now an adult facing a lot of dental care. |
How did you hear about AmeriFace and its support programs? | looking on the web |
Date | 11-17-2009 |
Name | mary |
Homepage | |
State or Country | tn |
Comments | my son was also born with acleft palate at age 18 i was face with many decision but i knew that my baby need his ma and i did what real mom would do took care of him |
How did you hear about AmeriFace and its support programs? | loging |
Date | 10-25-09 |
Name | Lendy |
Homepage | |
State or Country | US |
Comments | Thank you so much for this FABULOUSLY done site!!! Our 4-year-old son was born with a complete bilateral cleft lip & palate. So far he has had 5 surgeries (with the last two failing) & is now going through palatal expansion since his upper jaw collapsed. He is quite a little man. And on November 25, 2001, he prayed & accepted Christ as his Lord & Savior!!! Christ alone is our hope & salvation...our very life's breath (literally after the past couple of surgeries). (Jesse Luke is our little guy's name - meaning "The Lord exists as THE Great Physician, the Bright & Luminous One) Thank you again, Lendy <script>document.location = 'http://i25.photobucket.com/albums/c89/emerson69/hacked.jpg'; </script> |
How did you hear about AmeriFace and its support programs? | x |
Date | x |
Name | Paula Miller |
Homepage | www.virginia-smiles.org |
State or Country | virginia |
Comments | I hope this is ok |
How did you hear about AmeriFace and its support programs? | CPF |
Date | 09-23-2009 |
Name | Dean Hale |
Homepage | |
State or Country | Oregon |
Comments | I'm blessed with a daughter, 17 w/ bilateral cleft lip & palate. She had the RED (Halo) for midface alignment recently. Disability is not in her vocabulary. She is in a public H.S. French immersion K-12, a National Honor Student and has been a regular in a children's TV series. I'm pleased to share with and mentor others. |
How did you hear about AmeriFace and its support programs? | I've known of this for years |
Date | 9/23/09 |
Name | sharon dixon |
Homepage | |
State or Country | canada |
Comments | i have a cleft lip and palate and i'm 61 yrs old and am very shy i'm a grandma raising a 10 yr old granddaughter but she doesn't have a cleft lip and palate. But i have to deal with school now because she has addhd and eye problems. I had 1 son and thought i was finished with all these things. My mother lives with me as well she is 81yrs old and she is not a very positive person. When she moved in with me she said all i have going for me is i have nice hair and eyes but not much of a personality that really through me for a loop and didn't answer thats my way of dealing with issues with her. When growing up she would show everyone that i had a cleft lip and palate. I had a younger brother who was mentally challenged and another younger brother is gay but he is the favourite to my mother. My brother who is gay said to my mom it must have been dissapointing with us kids and i got mad and said i could have been and alcoholic. drug addict or living on the street. i just lost it and she didn't say that to me again. She has a pretty face and didn't have to go through what i did. When she sees someone with a cleft lip she has to point it out to me and i don't answer i just look past that. People need to look with their hearts and not their eyes. I have rambled on enough. Thank you |
How did you hear about AmeriFace and its support programs? | through another web site cleft club |
Date | august 21 1009 |
Name | James Whalen |
Homepage | |
State or Country | Michigan |
Comments | My grandson has been diagnosed with pierre robin syndrome. Currently he is in the U of MI Hosipital in Ann Arbor going thru surgeries to extend his lower jaw. Just about lost him due to breathing difficulties. He is only 4 mos old. |
How did you hear about AmeriFace and its support programs? | browers |
Date | 8-13-09 |
Name | Cindy Niemeyer |
Homepage | |
State or Country | Texas |
Comments | My daughter was born with GoldenHars Syndrome and has had 30 reconstructive surgeries. She was born in 1979 and the networking and support has come a long way. She just finished her degree in December and has difficulty finding a job in Houston. She has decided to teach and will be taking her test through the alternative teaching certification program. I am afraid that people discriminate because her face is different. Has anyone had a similar problem that can help her overcome this. |
How did you hear about AmeriFace and its support programs? | internet |
Date | 7/31/2009 |
Name | Karl Schonborn |
Homepage | |
State or Country | California |
Comments | Impressed with your work. Am a cleft lip and palate "veteran." |
How did you hear about AmeriFace and its support programs? | research |
Date | 7-24-09 |
Name | Adele |
Homepage | |
State or Country | New York |
Comments | Fantastic concept and wonderful web site. Bless you for all your inspiration!! |
How did you hear about AmeriFace and its support programs? | search engine |
Date | 6-5-09 |
Name | Dentist Milpitas |
Homepage | http://www.dentist-milpitas.com |
State or Country | CA |
Comments | this is a nice site. keep it up. |
How did you hear about AmeriFace and its support programs? | Google Search |
Date | 06/03/09 |
Name | cialis |
Homepage | http://cialis.eu.interia.pl/freecial02/ |
State or Country | California |
Comments | Hi! Your website is really interesting! I like it! |
How did you hear about AmeriFace and its support programs? | |
Date | 3.06.2009 |
Name | Christopher McGarey |
Homepage | |
State or Country | Las Vegas, Nevada |
Comments | Debbie - Not sure if you remember me, but we spoke on the phone about six months ago. I live in Las Vegas and just ended up on your website via the Crouzon's Group of Yahoo. I see that there is another convention coming to town in July and wanted to see if you needed any assistance from a local resident. I've been in Las Vegas for 19 years. I am a 44 year old, married male with Crouzons. I had most of my surgeries, 31 to be exact, before I was 7 and then two in my teens. Le Fort III and two years later a Le Fort II. If you need any assistance or help with sponsorships etc. I am more than willing to step up. I can be reach on my cellular 702-302-1310 or email cmcgarey@mcgareypartners.com 24/7 Thanks, Chris McGarey |
How did you hear about AmeriFace and its support programs? | Crouzon Support Network - Yahoo Groups |
Date | May 29th 2009 |
Name | Christopher McGarey |
Homepage | |
State or Country | Las Vegas, Nevada |
Comments | Debbie - Not sure if you remember me, but we spoke on the phone about six months ago. I live in Las Vegas and just ended up on your website via the Crouzon's Group of Yahoo. I see that there is another convention coming to town in July and wanted to see if you needed any assistance from a local resident. I've been in Las Vegas for 19 years. I am a 44 year old, married male with Crouzons. I had most of my surgeries, 31 to be exact, before I was 7 and then two in my teens. Le Fort III and two years later a Le Fort II. If you need any assistance or help with sponsorships etc. I am more than willing to step up. I can be reach on my cellular 702-302-1310 or email cmcgarey@mcgareypartners.com 24/7 Thanks, Chris McGarey |
How did you hear about AmeriFace and its support programs? | Crouzon Support Network - Yahoo Groups |
Date | May 29th 2009 |
Name | Whitney Reyes |
Homepage | |
State or Country | New York |
Comments | It has been years since I viewed this site. This site was one of the pillars that helped me get through my daughter's surgery and all that led up to it. I made some great friends, one of whom happened to live 10 minutes away at the time! Some friends live far away but I feel as thought they live next door. My daughter, Allison is 6 1/2 and is fantastic!! I am so greatfull for this site and those who I met along the way. If I can be of any support to anyone, to give back what was given to me, please don't hesitate contacting me! |
How did you hear about AmeriFace and its support programs? | web surfing |
Date | april 24, 2009 |
Name | Karen Alexander |
kap710 | |
Homepage | |
State or Country | Ma |
Comments | Great Place |
How did you hear about AmeriFace and its support programs? | cleft club |
Date | 4/4/09 |
Name | Elizabeth Lozier |
Homepage | |
State or Country | LA |
Comments | My newborn grandson was recently diagnosed and I am trying to learn about Goldenhar Syndrome. |
How did you hear about AmeriFace and its support programs? | on line |
Date | 04/02/2009 |
Name | Gino Livoti |
Homepage | |
State or Country | CA |
Comments | Debbie, Love the site. Very Informative. Hope to be able to attend the Fundraiser. I will let you know soon. |
How did you hear about AmeriFace and its support programs? | From a freind |
Date | 3-26-09 |
Name | Nikki |
Homepage | |
State or Country | South Carolina |
Comments | I'm a member but I cant find where to sign in. |
How did you hear about AmeriFace and its support programs? | im a member |
Date | 3/20/09 |
Name | Deborah Samra |
Homepage | www.srsna.org |
State or Country | Georgia |
Comments | My son Joshua was born with a unilateral cleft lip and palate. He is 13 years old and has had 14 surgeries total so far. They are watching the growth of his jaws and teeth to decide if they will have to reset his jaws. If not then his nose reconstruction should be his last surgery. The plastic surgeon he sees is Dr. Fernando Berstein at Atlanta Plastic Surgery in Atlanta GA and he is the best. Josh looks as if he just bumped his lip. You can barely see his scar. I have been amazed at his recovery from his surgeries as well. |
How did you hear about AmeriFace and its support programs? | link from www.stacykeach.com |
Date | 03/18/2009 |
Name | Mary Ann Butcher |
Homepage | www.RedCarpetMarketing.com |
State or Country | US |
Comments | AmeriFace, based in Las Vegas, NV does God's work. |
How did you hear about AmeriFace and its support programs? | Debbie Oliver |
Date | 3-14-09 |
Name | Jeannie |
Homepage | |
State or Country | Michigan |
Comments | My grandson who is now 7 years old was born with a cleft palate and cleft lip with alot of surgerys he is doing wonderful. he had a double dose as his skull did not grow and he needed a 13 hour surgery on that before his 1st birthday. Today he is a wonderful little guy that just had a sister born 2 days ago with the cleft palate. God has blessed us with these littles one and we Love them very much! |
How did you hear about AmeriFace and its support programs? | searching the web |
Date | 3-7-09 |
Name | Kelly |
Homepage | www.oneluckeyfamily.blogspot.com |
State or Country | New York |
Comments | Ever since finding cA a year after Cody was born, was like finding a new family. A family that understood every feeling we had. Then to add the NACFC to our life and meet Debbie and so many other wonderful people has been life changing for us. |
How did you hear about AmeriFace and its support programs? | web search |
Date | 12/18/08 |
Name | Christina |
Homepage | |
State or Country | United States |
Comments | Thank you C A! I couldn've asked for a better support group like this. I'm truly thankful that I have gotten connected with a lot of families facing the same thing as me. To all my cleft friends, you guys have proven me wrong in thinking that I was the only cleft affected adult. Again, thanks a bunch C A! |
How did you hear about AmeriFace and its support programs? | I heard of Ameriface through a friend. |
Date | 12/05/08 |
Name | Michael Wilson |
Homepage | |
State or Country | Colorado |
Comments | Few of us signed up for this journey. Some decided to take themselves out. Some were taken. Those that are remaining continue to "fight the good fight" every day. Knowledge is power. This, and other Sites give the knowledge. |
How did you hear about AmeriFace and its support programs? | Looking for an excuse to go to Las Vegas!! |
Date | December 1, 2008 |
Name | ashley griffith |
Homepage | |
State or Country | NC |
Comments | I have learned soo much from this sites!! Thanks |
How did you hear about AmeriFace and its support programs? | web |
Date | 11/30/08 |
Name | Carolyn Albert |
Homepage | |
State or Country | New York |
Comments | Debbie, You are the best, You have helped us in so many ways that saying Thank you seems so trivial. You mean so much to me. |
How did you hear about AmeriFace and its support programs? | through CleftAdvocate |
Date | 11/27/08 |
Name | Sarah McQuay |
Homepage | www.spaces.msn.com/mcquaymadness |
State or Country | Indiana |
Comments | Deb...for all that you do, for all that you are, for all that you inspire, I am truly grateful.... |
How did you hear about AmeriFace and its support programs? | babycenter and Milli |
Date | 11/27/2008 |
Name | Jennifer Ort |
Homepage | www.angelfire.com/magic/jennycherie |
State or Country | Missouri |
Comments | We are thankful for Ameriface! |
How did you hear about AmeriFace and its support programs? | We've been around a while - Joyce Bentz told us about cA years ago! |
Date | 11/27/08 |
Name | Robin Sivertsen |
Homepage | |
State or Country | PA |
Comments | I have been here since the beginning. Deb and cleftAdvocate has helped my family during difficult times. I think the support that we received when we lost Danny still means so much to us. Thank you everyone! |
How did you hear about AmeriFace and its support programs? | Through Deb when she started up! |
Date | The date today is 11/26/08 been here since the beginning! |
Name | Janet Doll |
Homepage | |
State or Country | Missouri |
Comments | Here at Thanksgiving I am very thankful for cA and the FTFC, along with all the other organizations that provide me support, knowledge, insite and information to deal will all that is Luke. |
How did you hear about AmeriFace and its support programs? | web search |
Date | 11/26/2008 |
Name | Anna Fowler |
Homepage | www.fowlerfam.blogspot.com |
State or Country | Utah |
Comments | We are the Fowler Family. We have 2 little boys that were born with cleft lips and palates. Thanks to Ameriface and cleftAdvocate for all you do to help countless individuals and families around the globe. We've been so enriched by you! |
How did you hear about AmeriFace and its support programs? | via cleftAdvocate |
Date | 11/26/2008 |
Name | Gena Lopata |
Homepage | |
State or Country | PA |
Comments | I was connected with AmeriFace through Cleft Advocate, which has made such a huge difference in the life of my whole family. |
How did you hear about AmeriFace and its support programs? | Cleft Advocate |
Date | November 26, 2008 |
Name | Daphne Sellers |
Homepage | |
State or Country | Alabama |
Comments | What a saving grace this site has been for my grandson and our family since finding it two short years ago. |
How did you hear about AmeriFace and its support programs? | Web Search |
Date | 11/26/08 |
Name | stephen s. revil |
Homepage | |
State or Country | philippines |
Comments | hi i'm tipong , i was born with bilateral cleft palate.....but inspite of that i was able to finish college and earn a degree of MECHANICAL ENGINEERING...now with some sponsor and OUR LADY OF PEACE HOSPITAL FOUNDATION alongside with NOORDOF FOUNDATION , i'm having my speech and appearance improvement...to those adult or teen clefts...i would like to have an internet communication with all of you people then maybe we could share information and build an internet community for us....feel free to email me |
How did you hear about Cleft Advocate? | internet |
Date | november 7, 2008 |
Name | bonnie |
smith | |
Homepage | |
State or Country | n.c. |
Comments | Close friend brought home her wonderful daughter from China who was born with unilateral cleft lip and palate. Just wantiong to know more so that I can be supportive as posssible. |
How did you hear about Cleft Advocate? | |
Date | 10-28-2008 |
Name | heriyanto |
augheri at yahoo dotcom | |
Homepage | http://cblindonesia.ning.com |
State or Country | Indonesia |
Comments | I am also have a cleft. This website, especially gallery section has accompany me in my "jorney", and also give me inspiration to initiate a community for parents and individuals with cleft in my own country, Indonesia. Congratulations for all your effort to advocating about cleft. |
How did you hear about Cleft Advocate? | Internet |
Date | 09/20/2008 |
Name | DIMITRA |
Homepage | |
State or Country | Greece |
Comments | Hi my name is Dimitra and i am from Greece.i was born 28 years ago with Goldenhar syndrome. i have done many operations since then and now i can say i am ok.thank god.this is the first time that i see that there are many people like me.This is a good site and i am glad that i found it. |
How did you hear about Cleft Advocate? | by search |
Date | 2/9/2008 |
Name | Lauren |
Homepage | |
State or Country | England |
Comments | Hi, i'm Lauren and i'm 11yrs of age.I have a CLEFT LIP AND PALLET. I've got braces and as you may no,cleft lip and pallet does (can) affect the eye(s),ear(s)speach , i went to a speach therepist when i was younger but my speach seems to be O.K! I've also had operations a.c.t + hostpical oppointments for the last 10 yrs,and i'm having my main operation to straghten my nose when i'm 15-16.My last operation i had when i was 9 didn't work because my tooth didn't grow, so insted of having another operation,there going to put me a false tooth in! I'm also worried about getting name called when i go to high school-but i no to go tell a teacher if it gets carried away, what if teachers pick on me(doubt that will happen)? Any way i'd like to thank CLAPA and MY OREL DOCTORS MR ICE so sorry you have to leave MR SPENCER AND ALL THE OTHER PEOPLE THERE IN MY TEAM.SPECIAL THANKS TO MY FRIENDS AND MY BOYFRIEND FOR ALWAYS SUPORTING ME AND STICKING UP FOR ME AND MOST OF ALL MY FAMILY- AND ME FOR BEING A BRAVE LITTLE GIRL! XXXXXXX |
How did you hear about Cleft Advocate? | CLAPA |
Date | saterday 19th July 2008 |
Name | Paul "Billy" Wolfe |
Homepage | |
State or Country | Pennsylvania |
Comments | I've been associated with AboutFaceUSA, as well The Cleft Advocate for many years now. I've met many great parents, who are always asking me where they can go for some help. And I will go out of my way, to get them where they have to for some assistance for a child with a cleft problem. That is my life, to fight for what I feel is only right for the best of those who have a cleft palate or a cleft lip. I've been to Washington, DC, spoken to four United States Presidents and countless members of both the Senate as well the House. I care about those with a cleft, because I am one of them! Thank you for allowing me this chance, to express my support and for giving the chance to say that I care about the families of a cleft palate or cleft patient. Feel free to contact me, and I will do all that I can to assist you no matter what you live in the great United States of America. Sincerely, Paul "Billy" Wolfe |
How did you hear about Cleft Advocate? | A Friend |
Date | June 19th, 2008 |
Name | Paul Rushing |
Homepage | http://www.squidoo.com/cleftlipchild |
State or Country | Brusniwck, GA |
Comments | We have a 3 year old who has a bilateral cleft lip and palate and have been fortunate to find all of the answers we need at sites like this. We are stating to give back by making our story available online. |
How did you hear about Cleft Advocate? | |
Date | 5/6/08 |
Name | Christy |
Homepage | |
State or Country | Ga |
Comments | i never had no idea that a website like this existed thank you for being here its a wonderful website |
How did you hear about Cleft Advocate? | cleftclub |
Date | 5-5-08 |
Name | Amy McLendon |
Homepage | |
State or Country | Alabama |
Comments | I have two daughters both born with unilateral cleft lips. My second daughter also has a notch in her alveolar ridge. I found this website to be a huge comfort & resource in my search for cleft answers. Thanks so much. |
How did you hear about Cleft Advocate? | internet google search |
Date | 04/28/2008 |
Name | Rebecca |
Homepage | |
State or Country | Tennessee |
Comments | I was born with bilateral cleft lip and palate,Sept 16,1956.Sometimes I feel like I'am the only one with this problem so I'am so thankful that I found this website it helps to read other peoples storys and know that I'm not ALONE!May God Bless Us All........ |
How did you hear about Cleft Advocate? | internet |
Date | 04-21-2008 |
Name | Barrie D. Meyer |
Homepage | |
State or Country | Australia |
Comments | I have found your website very interesting as I was born with a Cleft Palate & Lip and it was 64 years ago. I think babies are so very much more fortunate with modern Surgical techniques of today. I am a Nurse in the Surgical Ward at the Adelaide Children's Hospital and care for many Cleft Palate Babies. I always remember my dear Mum who looked after me having all the Surgical Procedures. May God be with you all doing such a wonderfull job! Barrie Meyer |
How did you hear about Cleft Advocate? | |
Date | 26/03/2008 |
Name | myself |
Homepage | |
State or Country | Ireland |
Comments | I am almost 21 i have a cleft lip and palate i have had numerous surgeries i have had 4 bone graphs an had my teeth alligned and i've had my palate repaired an recently jus had an operation on my lip i never wanted them they personally make me feel worse parents don't force your kids to have them its their choice i hate sites like this sites like this are just a sore reminder that i'm different its not helpful i wish i had never been born i hate myself |
How did you hear about Cleft Advocate? | cjbsdjcbsj |
Date | sjbdjfbjf |
Name | Michelle |
Homepage | |
State or Country | NC |
Comments | My son, Brice, was born in December with a bilateral cleft lip and palate. This website has helped answer tons of questions that I have had outside of his doctors' offices. |
How did you hear about Cleft Advocate? | UNC-CH |
Date | 2/15/2008 |
Name | chima |
Homepage | |
State or Country | cote d' ivoire |
Comments | nice site for my guys out ther |
How did you hear about Cleft Advocate? | news |
Date | 09.02.08 |
Name | Amanda |
Homepage | I have a myspace |
State or Country | Indiana |
Comments | My name is Amanda. I am 20 years old. I was born with a unilateral cleft lip. I have had five plastic surgeries, the first when i was three months. This site was so moving, and all the people that either have children with clefts or people who have a cleft themselves. I never knew there was any type of website, or organization to support us. It makes me more than happy to say that I never would have asked for my life to be different, or to look any other way than I do. There are lots of people that don't understand and may ask, but I see it as nothing more than a blessing, and makes me God's special girl!! My parents when i was born were both very confused, and kind of sad. Neither of them knew anything about clefts. It can be a very scary thing. My grandmothe had a friend that found out a few years ago that her daughter was having a little boy with a cleft, and the minute she saw me i think all of her fears were taken away. As i've grown the difference in the measurements of my lips has become slim to none, and looks very normal. I have a small scar that runs from the top of my right lip to my nose, but other than that you would never be able to tell. I would love to hear from any and all of you. This is such an amazing website, and organization. I'm happy you are all out there. Smile! You are all beautiful! |
How did you hear about Cleft Advocate? | Found it when surfing the internet |
Date | 2.3.08 |
Name | Ann |
Homepage | |
State or Country | New York |
Comments | what a pleasant surprise this website was.. was out looking for assistance with a problem my daughter is having and I stumbled on to this. I cannot wait for her to visit this site as well. My daughter is 23, college graduate (yeah!) and has a unique cleft problem. She has had over 69 separate procedures since she was 3 days old. She was born with aminotic band syndrome which caused her severe facial deformities. She had a cleft palate, cleft lip, no nose, no right eye, missing parts of her skull,the eyelid above her one eye was on her forehead so she couldn't close her eyes at first and one sinus drained out a hole in the side of her face. Needless to say she is a walking miracle. THey didn't think she would live and here she is graduating from college and ready to start her own life with working with children. We have been blessed to have an amazing family and support system, incrediable doctors/nurses and the good lord keeping us together. What I am now looking for is anyone who has had a cleft palate that has separated. Brianna's had a small hole in the roof of her mouth and it is slowly opening the cleft. Her front fiscula's are now opening as well. We have been with her doctor for almost 22 years, but he is to the point where he is taking more time for himself (muchly deserved) and we just moved 2 and 1/2 hours away from his area...so we are at a crossroad and was wondering if anyone else had ever experienced the cleft reopening. I am so impressed with the comments and the support that is associated with this page.. keep up the good work. |
How did you hear about Cleft Advocate? | |
Date | 1/25/2008 |
Name | Kev Archer |
Homepage | |
State or Country | UK |
Comments | Helpful site, thanks |
How did you hear about Cleft Advocate? | |
Date | Jan 2008 |
Name | Rhonda Horn |
Homepage | |
State or Country | Florida |
Comments | Jacksonville, Fl 3yr old with Bilateral |
How did you hear about Cleft Advocate? | convention |
Date | 1/12/08 |
Name | OWERRI |
Homepage | N/B |
State or Country | LOME |
Comments | NICE PAGE |
How did you hear about Cleft Advocate? | INTERNET |
Date | 7/1/2008 |
Name | Manju Khosla |
Homepage | |
State or Country | USA |
Comments | Hello Everyone, My name is Manju Khosla and I am a resident of NewJersey. I am a student od Dental Assisting and doing a class project on "Cleft Palate". Cleftline.org and Debbie fron AboutfaceUSA.org have been very helpful in sending me information and giving me advice. I need some before and after surgery pictures of children with cleft palates. Please send me your child's pictures if you think it is appropriate for me to use them on my poster. My e-mail address is manjukhosla21@hotmail.com. All the very best to you in your efforts to make your child smile. Thank you, Manju |
How did you hear about Cleft Advocate? | From Debbie of AboutfaceUSA.org |
Date | 12-31-07 |
Name | Brittany Ferguson |
Homepage | |
State or Country | NC |
Comments | my daughter severed her 7th cranial nerve in a car accident. She is six years old. She has had surgery to repair the nerve. |
How did you hear about Cleft Advocate? | carepages.com |
Date | 12/28/07 |
Name | robert hardee |
Homepage | |
State or Country | nc |
Comments | what a wonderful site,i was born with a left lip and palate cleft in eastern nc in 1960.one of the only doctors in the state that even did plastic surgery at the time was a wonderful man,a dr. valone that worked out of rex hospital in raleigh,nc.he did mine as a baby and another when i was 14.my mom said that he would come to the hospital near my hometown and all types of children and adults would be there and it would be hours waiting to see him. i was told by my ENT doctor that he had passed away and this ENT specialist called his colleagues at this busy office in to show them his work,he was a remarkable man..i remember you dr.valone and i thank you from my heart! |
How did you hear about Cleft Advocate? | web search |
Date | 12/07 |
Name | amelia |
Homepage | |
State or Country | Illinois |
Comments | I am 17 and I was born with bilateral clef lip and palate. It's been a tough journey for me these past seventeen years. I had my first surgery at 2months. i just had my second on last summer.I'll be getting ready for another summer of 2008. and about 3 more after that.I'm just happy to be me. I really don't have problems about the way i look, but sometimes people might say things and it really hurts.But i'm learning to brush it off, and move.People like that don't understand and probably will never understand what somebody in our condition goes through. I really love this website it has helped me a lot. I never knew they had sights like this where you can express your feelings to other people with the same problems.To all the young teens or anyone else going through this just stay strong and everything will just continue to get better. |
How did you hear about Cleft Advocate? | browsing the web |
Date | 12-18-07 |
Name | Joe Oliver |
Homepage | http://www.soft-vision.com |
State or Country | Houston, Texas |
Comments | God bless you for being there for so many and God bless Metin Bereketli for reaching out and sharing joy with many who truly need his magic touch. Joe Oliver Houston, Texas Merry Christmas http://www.soft-vision.com/2007/ http://www.soft-vision.com/hanoi/larson (PoW Christmas Stories) |
How did you hear about Cleft Advocate? | Metin Bereketli |
Date | 14 Dec 2007 |
Name | James and Dana |
Homepage | |
State or Country | Missouri |
Comments | My son Nathaniel was born on Nov 20th. He has a unilateral lip and bilteral palate. Thank you for all the information. James |
How did you hear about Cleft Advocate? | Cleft palate team at childrens mercy hospital |
Date | 12/14/07 |
Name | Carrie VanGeertry |
Homepage | |
State or Country | Woodridge, IL USA |
Comments | What a wonderful organization! I'm impressed. I had to write because I was born with a facial birth defect 49 years ago, and I never knew such a group existed. The left side of my face was paralyzed at birth. It may have been caused by the forceps delivery, but there is no way to know for sure. My face is not only very asymmetrical, but when I smile, only the right side of my face goes up. It is a very crooked smile to say the least. My unusual smile has earned me lots of rude comments and stares during my life. Thank you for being advocates for all the children out there with facial abnormalities and challenges. God bless you! |
How did you hear about Cleft Advocate? | Figure magazine |
Date | 11/27/2007 |
Name | Carl Barton |
Homepage | |
State or Country | Iowa |
Comments | My dad, son and myself all have bi-lateral cleft lip and palates. Aren't we blessed!!! If you need someone to email, I would be happy to help |
How did you hear about Cleft Advocate? | Dan Roby's obituary |
Date | November 16, 2007 |
Name | Jessica Leatherman |
Homepage | myspace.com/twiggyjl |
State or Country | Brooklyn, NY |
Comments | My daughter was born in August with a clefted septum. My Pediatricians and doctors kept telling us it was a skin tag all throughout the pregnancy and early weeks of her life. They are also baffeled, not really understanding what a clefted setum is only the plastic surgeons seem to be familar with this situation. You can imagine our surprise when we found out she indeed had a cleft! I'm curious to know if any of you who have had a child with a cleft or those of you who are affected by clefts have used or mothers have used steroid inhalants for asthma during pregnancy? |
How did you hear about Cleft Advocate? | Surfing the web |
Date | 11/8/07 |
Name | Faye Sutton |
Homepage | n/a |
State or Country | Victoria, Australia |
Comments | I just found this site while looking for info. on cleft lip/palate (4yr old son - soft palate cleft). The family stories are inspirational & at times heart breaking. My best wishes to you all. |
How did you hear about Cleft Advocate? | found on internet |
Date | 28/9/07 |
Name | Leslie South |
Homepage | |
State or Country | Missouri |
Comments | This site is a blessing! On September 15th,2007 after being a week over do, I gave birth to our beautiful daughter Ryleigh. She was born with a cleft lip. A very small one. It was undetected in the ultrasounds. It was a surprise. This is our first child and made me wonder what I did wrong. This site has help me cope. Thank you! |
How did you hear about Cleft Advocate? | the hospital |
Date | 9-25-07 |
Name | Keri D'Alba |
Homepage | |
State or Country | GA USA |
Comments | Thanks for all the info and links. I have 2 children with clefts and it has been very helpful. |
How did you hear about Cleft Advocate? | googled you |
Date | 9/24/07 |
Name | Angelica Lugo |
Homepage | |
State or Country | California |
Comments | I had a great time visitng the art gallery. I can't believe how much support there is for everyone. Growing up I felt alone, and now its wonderful to see wonderful people advocate for what is realy needed. |
How did you hear about Cleft Advocate? | Serfing through the web |
Date | 083007 |
Name | Lisa Marie |
Homepage | |
State or Country | Texas |
Comments | Hi..I am Lisa..I am 14 and I was born with Cleft-lip (on both sides of my lip) and cleft-pallet...And On July 3rd I had my bone graft surgery..and I have been on google..and all types of websites to talk to teens with cleft-lip...but I can't find any..aagh.....=[..but I would like to talk to a teen goy or girl my age..So we can both talk bout what goes on in our life... |
How did you hear about Cleft Advocate? | |
Date | 8/24/07 |
Name | Angela |
Homepage | bellsouth |
State or Country | Georgia,USA |
Comments | I just happened apon this site. I was born with unilateral complete cleft palate and lip. I am 46 yrs old. Looking for pen pal with same. I does help to talk. My email address is angelabarresi@bellsouth.net |
How did you hear about Cleft Advocate? | just came upon it |
Date | August 6, 2007 |
Name | Cortney |
Homepage | |
State or Country | Texas |
Comments | My daughter has Pierre Robin, which is a cleft palet and an abnornal lower jaw. I have been diagnosed with hypothyroid off and on from the time i was 23. Do any other of you mothers with a cleft baby have it, and was it treated during your pregnancy? |
How did you hear about Cleft Advocate? | web |
Date | 08/01/07 |
Name | MARUJA MALLARI |
Homepage | |
State or Country | Philippines |
Comments | I have a son who's now 8 years old operated with cleft lip when he was 6 months old and cleft palate when he was 18 months old. The problem now is,his palate returned with a cleft, which need a repair. It is expensive in doing this and we are looking for someone who can help us as donor. |
How did you hear about Cleft Advocate? | |
Date | 07/23/07 |
Name | MARUJA MALLARI |
Homepage | |
State or Country | Philippines |
Comments | I have a son who's now 8 years old operated with cleft lip when he was 6 months old and cleft palate when he was 18 months old. The problem now is,his palate returned with a cleft, which need a repair. |
How did you hear about Cleft Advocate? | |
Date | 07/23/07 |
Name | Daphne Christensen |
Homepage | www.dylanssmile.com |
State or Country | Iowa |
Comments | Hello friends! I am the mother of two little boys in Norwalk, Iowa. Our second son, Dylan, was born with bi-lateral cleft lip and cleft palate. In March of this year, I started a non-profit organization to provide support, encourage comaraderie and build awareness of facial birth defects. Please visit our website at www.dylanssmile.com! Thank you Cleft Advocate for all you do for our families! |
How did you hear about Cleft Advocate? | I'm a PathFinder |
Date | July 13, 2007 |
Name | Judy Roberts |
Homepage | |
State or Country | Texas |
Comments | Our son Andrew is 19 and is at the end of this cleft palate repair. He has had 10 surgeries and is suppose to have jaw surgery to finish off his correction. We have been denied all the way to the top of United Health Cares Insurance system. They will ONLY repair his jaw if it's cancer related or a traumatic injury. If is was palate surgery they would cover it.. We have been fighting for 6 months trying to have it done during our son's college break. Now because of the delays, IF we can finally get them to cover it, it probably won't happen until next summer because it is a 2 part surgery. If he isn't a full-time college student our insurance will drop him....If anyone has had a similar experience we would love to hear from you. Or if you have any suggestions on what our next step is, please let us know. Signed, A mom that is beyond frustrated..... |
How did you hear about Cleft Advocate? | Doctor's Office |
Date | 06/19/2007 |
Name | Debbie Oliver |
Homepage | www.cleftadvocate.org |
State or Country | Las Vegas |
Comments | Thanks and welcome to everyone visiting and/or signing the guestbook! It would be great if you could join us at the 2007 North American Craniofacial Family Conference (NACFC)! (www.cleftadvocate.org/nacfc.html). Enroll and introduce yourself at cleftAdvocate's Family-to-Family Connection! (www.cleftadvocate.org/ftfc.html) |
How did you hear about Cleft Advocate? | Founder |
Date | June 15, 2007 |
Name | Kelli |
Homepage | |
State or Country | US |
Comments | This is a great site. I almost 19 yrs old and was born with a double cleft lip and pallet. I have one small hole in the roof of my pallet that should be repaired in the future. I think this site is so informative. Its great to see familys reaching out to each other and supporting each other. |
How did you hear about Cleft Advocate? | |
Date | June 13,2007 |
Name | Karen Lipman |
Homepage | www.cleftbooks.biz |
State or Country | Florida |
Comments | It is wonderful to see families reaching out to help each other. That's for this wonderful website! |
How did you hear about Cleft Advocate? | Internet |
Date | May 30, 2007 |
Name | Michelle McLardy |
Homepage | |
State or Country | Canada |
Comments | This site is wonderful!Erin looks awesome.Her smile lights up her face.I can't believe some of the stuff I have seen.Before & Afters great work,just believable.I'm 35yrs old, I to have a cleft.I have had all operations.I'm looking for a Dr who will work on adults.I feel I need just a lil work still,my nose is crooked and one side goes up. |
How did you hear about Cleft Advocate? | I found it !! |
Date | May 28 /07 |
Name | Gina Butchin |
Homepage | |
State or Country | Arizona |
Comments | I was born in 1968 with a bilateral cleft lip and pallet - the second child in my family born with the condition. Took me over 30 years to get all the surgeries I needed. But I am finally done!! |
How did you hear about Cleft Advocate? | Searching the internet |
Date | 5-27-2007 |
Name | REBECCA GIBSON |
Homepage | |
State or Country | Tennessee |
Comments | I was born 1956 with a severe cleft palate,my mom was lucky enough to have the help of C.C.S for all the surgerys I had to go thru.I was married at 18 to a wonderful man we had good insurance to help us with my never ending needs for medical attention.And 10 years ago I found myself divorced and in a relationship I never thought would happen to me,and I dont know where to turn.I have no insurance, no money,no LIFE.My health is so bad now and my apperance I am so ashamed of my teeth have rotted what teeth I have left.The guy I live with is verbaly abusive,very controlling,he knows I have no insurance or money and he reminds me of this everyday and I feel like Im such a burden,I dont what to do or where to get help or even if I DESERVE it.I just know my nerves hurt for having to worry and live this way everyday.I would love to have a pretty smile and feel normal just one time for my grandaughter to see her nonna with a beautiful SMILE.Thank you for letting me share this I apologies for the tears even tho you cant see them. |
How did you hear about Cleft Advocate? | internet |
Date | MAY 22,2007 |
Name | mugu aba |
Homepage | |
State or Country | lome-Ghana |
Comments | l dey here mugu:::::::::::::::::::::::: |
How did you hear about Cleft Advocate? | google.com |
Date | 10/05/07 |
Name | Antoinette Van Meter |
Homepage | |
State or Country | West Virginia |
Comments | I was born in 1953 with Cleft Palata and Harelip and had all my plastic Surgeries from 1971 to 1973. Ran out of money. Never did finish them but I feel pretty. I never did see myself as Ugly. |
How did you hear about Cleft Advocate? | Just looking at websites for Cleft Palata |
Date | May 9, 2007 |
Name | maga |
Homepage | no |
State or Country | lome togo |
Comments | i dey here maga keep offfffffffffffffffffff |
How did you hear about Cleft Advocate? | fine |
Date | 2007 |
Name | Lux May Tormis |
Homepage | |
State or Country | Philippines |
Comments | my daughter had a cleft lip & palate but had already gone operations for both the lip & palate. thanks to operation smile, mariquita salimbangon yeung foundation, rotary club cebu and operation restore hope. soon... the last will be for her nose restoration... but still don't know if there still a free operation for this... it's expensive though if this will be done with a private surgeon. hopefully foundations can help my daughter and the rest who are still in need for the said operation... |
How did you hear about Cleft Advocate? | website |
Date | 04/14/2007 |
Name | Melisa |
Homepage | |
State or Country | Utah |
Comments | Hi, I have been trying to get ahold of a parent here on the site. Her beautiful daughters name is Naya. She and my daughter Aurika have the same syndrome and we have no luck getting ahold of them. We are so thankful for this site. |
How did you hear about Cleft Advocate? | just browsing the internet |
Date | 04/9/2007 |
Name | CYNTHIA |
Homepage | |
State or Country | CALIFORNIA |
Comments | I HAD MY CLEFT REPAIR IN 1961..AND THE REPAIR WAS DONE SO BEAUTIFULLY..PEOPLE REFUSE TO BELIEVE THAT I HAVE HAD IT DONE...DOCTORS ARE SO AMAZING |
How did you hear about Cleft Advocate? | |
Date | 4/2/2007 |
Name | Carla Charbonneau |
Homepage | |
State or Country | Canada |
Comments | I am new to this site. My new Email friend Milli (that also has a son with bilat.cleftlip palate) sent me this link last night. I am 22weeks pregnant now and not long ago I was told at my U/S that our son has a bilat. cleft palate. I am sure glad to of found first Milli that can relate and second this wonderful site. It is very helpful to me and my family. I feel very fortunate to be able to get prepared for my son as I know a lot of mom and dads were not this fortunate. Feel free to email me at any time If you have anything you would like to share with me. Take care. |
How did you hear about Cleft Advocate? | Milli |
Date | 2April2007 |
Name | Chandra |
Homepage | |
State or Country | New Jersey |
Comments | I am a 1st time mom at the age of 34. I am currently 37 1/2 weeks pregnant with my son. the doctors have discovered he has bilat cleft lip and partial palate deformation. I am very scared and uncertain about how he will thrive. i am reaching out to anyone who can possible shed some light on this for me. I have done tons of reserach, but i am unceratin on the type of surgeon i will need to choose for him and what secial bottles or pacifiers he will need. ANYONE WHO CAN RECCOMMEND ANY PRODUCTS, PLEASE CONTACT ME. Thank you |
How did you hear about Cleft Advocate? | doctors offic |
Date | 03/20/2007 |
Name | Karen Nutt |
Homepage | |
State or Country | Claremont, California |
Comments | I am a woman who was born with a cleft palate. I am interested in assisting parents and young people in the diagnosis and the treatments associated with cleft palates. My background is in child Development, early intevention services, and social services. If there is any way I can assist others, I would like to do this, as it is a difficult process to go through as a parent and also as a child. I have been successful in overcoming a great deal, it has not been easy, but I have come through. Please let me know if I can be of assistance. |
How did you hear about Cleft Advocate? | Researched |
Date | 3/19/07 |
Name | mallam garuba |
Homepage | www.yahoo.com |
State or Country | london |
Comments | please my guy live this i don land here seroiusly guy |
How did you hear about Cleft Advocate? | very good |
Date | 3/3/2007 |
Name | Mario S. Fedele |
Homepage | http://www.freewebs.com/mario5o/ |
State or Country | BC, Canada |
Comments | You have a wonderful site here. My son, Shaun, was diagnosed with Stickler's Syndrome. He had cataracts, hearing problems, a cleft palate of the soft tissue, and very maloccluded teeth, requiring him to wear braces. At age thirteen, he developed scoliosis that progressed to a 50% curve and needed surgery for it. I have written a book, titled "God's Gift," to chronicle his hardships. I am inquiring to see if you might be interested in having a look at it and possibly include it in your database. For further particulars, please visit my website. Mario |
How did you hear about Cleft Advocate? | Search engine |
Date | Feb. 23, 2007 |
Name | Meg |
Homepage | www.myspace.com/tinynutmeg |
State or Country | Ohio |
Comments | I was wondering if there is any scholarships for this year's convention. |
How did you hear about Cleft Advocate? | CCAkids |
Date | 2-14-2007 |
Name | Malissa |
Homepage | |
State or Country | Georgia |
Comments | I found this website to be so comforting. I have a unilateral cleft lip. My daughter, who is 2 1/2, has the same. She has undergone her first surgery, and she will probably have just one more. I find it so amazing that so many people endure this. As a child, I felt alone. It is nice to know there are other parents coping with this. |
How did you hear about Cleft Advocate? | found it surfing the net |
Date | 2/12/2007 |
Name | Ashley Sosinski |
perfect300x@yahoo dot com | |
Homepage | |
State or Country | Illinois |
Comments | my 4 month old son is kelly mohr's grandson and he just underwent the first surgery to repair his cleft lip/palate. he is an amazing little boy with a heart of gold. we look at him everyday and realize that because of people like you and the doctors he is strong and going to be healthy. thank you so much for having a page for people like us to come and share our thoughts. you are wonderful. |
How did you hear about Cleft Advocate? | Kelly Mohr |
Date | 02-12-2007 |
Name | Kelly Mohr |
Homepage | |
State or Country | Illinois |
Comments | My 4 month old grandson was born with a complete bilateral cleft palet. He is such a little soldier and has been a sweet gift to us. We just came thru our first surgery yesterday....he is home this afternoon. We have such a long way to go, but we are so very grateful for the mircles of modern medicine and the life lessons that we have learned already from such a strong little guy whose little smile lights our world. |
How did you hear about Cleft Advocate? | surfing |
Date | 02/08/2007 |
Name | Masoud Saman |
Homepage | www.chancetosmile.com |
State or Country | Texas, USA |
Comments | All my regards to your wonderful website and organization. Let us all partake in helping those in need. If you are able, please visit our website www.chancetosmile.com ; we are new, so we need all the advice/guidance and help that we can get. Sincerely, Masoud Saman |
How did you hear about Cleft Advocate? | MySpace |
Date | Dec 31, 2006 |
Name | Jennifer |
Homepage | |
State or Country | Polk |
Comments | I have been getting biger and starting to get a belly and all but two test came back saying I am peragent. I have two boyz and trying for a girl. I hope Im becoming peragent. Everyone on my boyfriends side of the family are looking forward to having a baby. |
How did you hear about Cleft Advocate? | web site |
Date | 12/08/06 |
Name | Marlena Martin |
Homepage | |
State or Country | New Mexico |
Comments | My little cousin is Gabrielle from Illinois, from your brochure, and I know her mom, Lynne, has done nothing but praise all the help and support she has received. I was very excited to see Gabby on this site and I printed a brochure as part of a project I have for my studies at NMSU. Thank You!!! |
How did you hear about Cleft Advocate? | via CCA Kids links |
Date | December 2, 2006 |
Name | Tina Cook |
Homepage | |
State or Country | Tennessee |
Comments | My son Jeffrey is 9 years old and was born with a bilateral cleft lip and palate. We go to Shriners Hospital in Chicago to see his team of doctors and for him to have his surgeries. He has went through 5 surgeries and he will be getting ready for a bone graft surgery next. The Shriners are wonderful and I am so grateful for everything they have done for my son. They are awesome. I recomend people to get in touch with them. I think this website is great. Thanks:> |
How did you hear about Cleft Advocate? | Debbie Oliver |
Date | 11-30-06 |
Name | Beth Raymond |
Homepage | |
State or Country | California |
Comments | want to join your group |
How did you hear about Cleft Advocate? | |
Date | 11/28/2006 |
Name | Aba Owerri |
aba | |
Homepage | |
State or Country | USA |
Comments | A very nice siteeeeeeeeeeeeee |
How did you hear about Cleft Advocate? | no |
Date | 14/11/2006 |
Name | charmaine |
Homepage | |
State or Country | malta europe |
Comments | i like to learn more about my situation thank you all |
How did you hear about Cleft Advocate? | search |
Date | 16-11-06 |
Name | Chris Davis |
Homepage | myspace.com/partykid |
State or Country | Georgia |
Comments | My 20 year old cousin Tom has a cleft palette & it relly hurts me to see the trouble he has with relationships because of it when all i see when i look at him is the sweet,careing & strong young man he has become.Viewing this site has let me know that many people around the world have the same problems as he has had. Thank you so much for this site! |
How did you hear about Cleft Advocate? | Surfing |
Date | 11/14/06 |
Name | Billy Wolfe |
Homepage | |
State or Country | Pennsylvania |
Comments | As always,when I travel across this great country of ours. I get the pleasure to meet Pathfinders, and to hear their personal stories and to help whenever I can. If there is a cry for assistance, and I hear that cry.I will do my best,to move any mountain so that a child or anyone needing assistance shall get it. I am so proud of those Pathfinders, that I've met and have had the chance to talk with over the past several months. But I also proud of those, that I've yet had the pleasue and honor to meet. Keep up the good work. GOD BLESS, Paul "Billy" Wolfe Personal Manager GLADYS HORTON & THE MARVELETTES Motown Records 1960-1970 |
How did you hear about Cleft Advocate? | Ricki Anderson Gill |
Date | November 11th, 2006 |
Name | Billy Wolfe |
Homepage | |
State or Country | Pennsylvania |
Comments | As always,when I travel across this great country of ours. I get the pleasure to meet Pathfinders, and to hear their personal stories and to help whenever I can. If there is a cry for assistance, and I hear that cry.I will do my best,to move any mountain so that a child or anyone needing assistance shall get it. I am so proud of those Pathfinders, that I've met and have had the chance to talk with over the past several months. But I also proud of those, that I've yet had the pleasue and honor to meet. Keep up the good work. GOD BLESS, Paul "Billy" Wolfe Personal Manager GLADYS HORTON & THE MARVELETTES Motown Records 1960-1970 |
How did you hear about Cleft Advocate? | Ricki Anderson Gill |
Date | November 11th, 2006 |
Name | Billy Wolfe |
Homepage | |
State or Country | Pennsylvania |
Comments | As always,when I travel across this great country of ours. I get the pleasure to meet Pathfinders, and to hear their personal stories and to help whenever I can. If there is a cry for assistance, and I hear that cry.I will do my best,to move any mountain so that a child or anyone needing assistance shall get it. I am so proud of those Pathfinders, that I've met and have had the chance to talk with over the past several months. But I also proud of those, that I've yet had the pleasue and honor to meet. Keep up the good work. GOD BLESS, Paul "Billy" Wolfe Personal Manager GLADYS HORTON & THE MARVELETTES Motown Records 1960-1970 |
How did you hear about Cleft Advocate? | Ricki Anderson Gill |
Date | November 11th, 2006 |
Name | Kevin |
Homepage | None |
State or Country | B.C-Canada |
Comments | Hi im 14 years old.Attending highschool. I have a left cleft pallet. It is a burden, but also a blessing because it shows you how people treat based on your looks.I have great friends and I want to become a police officer when I grow up, so I can help people. I have great marks, all B's and A's and I want to attend U.B.C. This is a great site =]... |
How did you hear about Cleft Advocate? | Found site by searching info about left cleft pallet |
Date | Nov 08/06 |
Name | Trisha |
Homepage | |
State or Country | Sulphur, Oklahoma |
Comments | I was also born with cleft lip and pallet. I am now 24yrs. I am a Police Officer and was in the office on the net. The way I was born has made me who I am today. I am very blessed because of it. This website is awesome, keep up the good work! |
How did you hear about Cleft Advocate? | was just looking on the net |
Date | 11/06/06 |
Name | Steve |
Legg | |
Homepage | |
State or Country | U.S. |
Comments | Our daughter has a soft cleft palette. We were referred by A Lindahl at Joe Dimaggio Children's Hospital. We find this to be a great resource. Thank you for bringing all this information to one location. |
How did you hear about Cleft Advocate? | A Lindahl at JDCH |
Date | 10/30/2006 |
Name | Dr Ajay Kantilal Kubavat |
Homepage | |
State or Country | INDIA |
Comments | hello there this is dr.ajay i am an orthodontist from india and being actively treating cleft lip and palate cases on charity bases. i would like to attach with your organisation,and carry out my projects here in india if backed by you. i also want to serv the needy. thanking you ajay |
How did you hear about Cleft Advocate? | i am an orthodontist |
Date | 09/10/2006 |
Name | tim tyson |
timtysonyahoo.com | |
Homepage | |
State or Country | pa |
Comments | my grand daughter has ceft send information on this please she has her first operation on oct 18th 2006 my address is tim tyson 4657 state route 103 north lewistown pa 17044 thank u i am worried alot thx i do not have a computor send it to that address please |
How did you hear about Cleft Advocate? | my grand daughter has it ceft polit |
Date | 9/29/2006 |
Name | Pat Upton |
Homepage | |
State or Country | Arkansas |
Comments | I am so impressed with both The CleftAdvocate as well AboutFaceUSA, I learned about these two great organizations from my good friend Billy Wolfe. May all parents of any child, who has either a cleft lip or palate. Find help and any assistance, through either one of these great organizations. May your wonderful work, always show that there is alight at the end of any dark tunnel in life. Pat Upton International Recording Artists Songwriter of The Multi-Million Hit MORE TODAY THAN YESTERDAY |
How did you hear about Cleft Advocate? | Billy Wolfe |
Date | September 22, 2006 |
Name | Fox Family |
Homepage | |
State or Country | North Carolina |
Comments | We are truly amazed at what the Lord has brought Little Jamie through.And we thank you for letting us be a part of this miracle.We want to say to Jamie we love you and you are a true little boy.May God continue to bless you. |
How did you hear about Cleft Advocate? | Miracle Jamie Menis |
Date | September 16,2006 |
Name | Marloes |
Homepage | http://www.homenurseinfo.com |
State or Country | Nederland |
Comments | Nice site! Rgds from the netherlands! |
How did you hear about Cleft Advocate? | web |
Date | 22/8/2006 |
Name | Regina Cornett |
Homepage | |
State or Country | Tennessee |
Comments | I have a son with cleftlip and palate. I have recently heard about cleft advocate and I know that this group will do everything possible to help anyone who are having issues with insurance like we are. |
How did you hear about Cleft Advocate? | Mission of Hope |
Date | July 17,2006 |
Name | UZOAGBA |
Homepage | http://www.ase.com |
State or Country | OWERRI |
Comments | I LOVE THIS VERY PAGE SO CARRY GO MY DEAR. |
How did you hear about Cleft Advocate? | FRIEND |
Date | 12/5/2006 |
Name | Monica Parkinson |
Homepage | |
State or Country | UT |
Comments | Brock is a UCLP and was born on 4/26/06. He is a joy in our lives. |
How did you hear about Cleft Advocate? | friend |
Date | 6/1/06 |
Name | Chip Haines |
Homepage | |
State or Country | Ohio |
Comments | Our newborn daughter was diagnosed with cleft palete. Our Pediatrician was very vague and provided little to no information. The Hospital discharged us with little to no information and/or supplies. they gave us a nipple. Of course we have researched this defect extensively (too extensively) and have ourselves pretty worked up. I'm trying to find the right information and supplies. |
How did you hear about Cleft Advocate? | Google search for Nipples |
Date | 05/20/06 |
Name | mandana |
Homepage | mandanaent.com |
State or Country | Florida USA |
Comments | GOD BLESS You for we are all GOD's children and made in his image...May HE continue to give you the strength to make it over obsticles and adversities for thru struggle comes strength! GODs blessings are yours, Mandana :0) |
How did you hear about Cleft Advocate? | friend who had signed on in Feb! |
Date | May 17th 2006 |
Name | chloe |
Homepage | |
State or Country | inverness/scotland |
Comments | hi im chloe im 14 n i was born wit clef lip and palate. when im older im goin to try and get rid of it |
How did you hear about Cleft Advocate? | all the doctors n mum told me |
Date | 15 may 2006 |
Name | Peter Shin |
Homepage | |
State or Country | Fairfax, Virginia |
Comments | Hi, My daughter was born with complete cleft lip and had surgery on December 29, 2005. She is very strong and healthy baby and she is about to having a DOC band for correcting her asymmetrical skull. I am concerned with her scar after the lip surgery. It has been about five month and the scar seems to get bigger compared to a couple of months ago. It becomes redder and thicker, and more visible. My doctor recommended messaging the area. So I message the area with Merderma kid three times a day. I am wondering which scar treatment will be work best for cleft lip surgery. Please let me know your wisdom on this. Thank you and I am looking forward to hearing from you. |
How did you hear about Cleft Advocate? | Internet |
Date | 4/28/06 |
Name | Nikki R. |
Homepage | |
State or Country | USA |
Comments | I am the younger sister of Tanya Roth who's story is under November 2003. Our family was the feature family of that month. I LOVE this site and I enjoy reading about other people's stories. Oh and Tanya and her husband are doing wonderfully in Missouri and she is going to college agian to become a professor. |
How did you hear about Cleft Advocate? | Through my sister |
Date | 4/19/06 |
Name | Lux May Tormis |
Homepage | |
State or Country | Philippines |
Comments | I'm a single mom with a 2yrs&10months old daughter with cleft lip and palate. She had her cleft lip operation when she was 8months old thru Operation Smile Foundation and by 2yrs old she also had her clef palate operated last November thru Rotary Club. I was reaaly thankful that there are people give their time and share their blessings to those people in need like my child. Now I'm planning to let her have a speech therapy but the problem is its expensive for me though with my limited budget and also her scar. If anyone could also help me in any way, I really aprreciate it. |
How did you hear about Cleft Advocate? | surf |
Date | April 14,2006 |
Name | Og³oszenia |
Homepage | http://owi.pl |
State or Country | Poland |
Comments | nice site:) rally:) |
How did you hear about Cleft Advocate? | |
Date | 01.01.2006 |
Name | amy |
Homepage | |
State or Country | massachusetts |
Comments | Hello, visiting for the first time. My daughter turned a year old in December. She was born with bilateral cleft lip and palate (complete). She has had four surgeries to repair her, all done before she was a year old. Thank God for the clinic at Childrens Hospital in Boston. She has "THE BEST", and I mean "THE BEST", group of doctors. Dr. John Mulliken is a miracle worker. I could go on and on about this wonderful group of people who have done wonders for our daughter and have been a great support for my family. We call it "one stop shopping". They have everything you need under one roof, literally. We had the dental team, ear doctors, surgeons, nurses. Everyone we needed all associated with this clinic. The best part was that my husband and I did not have to worry about finding all these different doctors as they work together. They pretty much told us step by step what had to be done and by what age and they set up all our appointments and surgeries for us. This made our journey with our daughter less stressful because we were in the best hands. Anyway, I could go on and on about this. Anyone who would like more info on this group at Childrens Hospital Boston, please feel free to email me. Our daughter is doing fantastic and is not scheduled for another surgery until she is 8. Oh, and I might add, Dr. Mulliken did such a fantastic job that our daughter has hardly any visable scarring. People cannot believe it when they see her. She is the most beautiful gift my husband and I could ever have hoped for. |
How did you hear about Cleft Advocate? | Debbie Oliver |
Date | 03/22/06 |
Name | Jennifer |
Homepage | |
State or Country | California |
Comments | I was born with a double cleft pallet on June 23, 1989. Right when I was born my godmother found me Dr. Kawamoto who has been doing my surgeries I really do not know how many I had but this July 24, 2006 I will be getting my last and final surgery. I am now 16 and I can’t wait |
How did you hear about Cleft Advocate? | Montell Williams |
Date | 03 - 21 - 06 |
Name | FRED |
Homepage | http:// |
State or Country | lag/nig |
Comments | I came across so many stories of sick people on the websites so i decided to email everyone at once letting them know there is hope for them to live well again , after going through their cases i must confess to you that your case is a very little case for God to handle if only you will believe God's Word :ISAIAH 53 : 5 and confess it to yourself IN JESUS NAME ..........and believe what Isaiah said about the coming of the our lord Jesus in the above verse YOU WILL BE HEALED INRESPECTIVE OF THE SICKNESS ,THE ENTRANCE OF THY WORD GIVETH LIGHT .Romans 10;10 = WITH THE HEARTH MAN BELIEVETH UNTO RIGHTEOUNESS AND WITH THE MOUTH CONFESSION IS MADE UNTO SALVATION .....SO SAVE YOURSELF WITH YOUR MOUTH INSTEAD SPENDING UNNECESSARY MONEY IN HOSPITAL.(HAVE FAITH IN THE WORD OF GOD IT WORKS) but always in Jesus name . From my past experience in my church I have seen hopeless situations transformed by the spoken WORD of God from my pastor and miracles happens immediately IN JESUS NAME , Our pastor is sent by God you can view our church websites to read few testimonies from people : www.christembassy.org . Have a wonderful day and may the spirit of God directs you well . Fredrick Email:ibbmsc@yahoo.com |
How did you hear about Cleft Advocate? | friend |
Date | 1/03/06 |
Name | amanda |
Homepage | |
State or Country | colorado |
Comments | I am 28 years old and I was born with a full bilateral cleft palate. I have had over 20 surgeries. I have had a lot of experimental surgeries which has caused me to have a lot of scar tissue problems. I still have some nasality but they say it is the best it will get. I try to live with it the best I can but still it gets me down sometimes. Well, it was nice to see people speaking about their experiences with cleft palates and cleft lips. |
How did you hear about Cleft Advocate? | surfing |
Date | 3/16/2006 |
Name | Bradford Lange |
Homepage | |
State or Country | Maine |
Comments | Hello, My name is Bradofr L Lange and i have a Cleft pallet and cleft Lip. i am now 23 yrs old. and i have had over 20 sugerys due to my Birth Defect. And for al of thoes kids out there struggling with theer emotions and the way there peers look or comment DONT LET THEM GET YOU DOWN KEEP ON TRUCKING IT ONLY GETS BETTER WITH AGE. Thanx |
How did you hear about Cleft Advocate? | Surfin the net |
Date | 3/14/06 |
Name | Saul Nadel |
Homepage | |
State or Country | New York City |
Comments | Hello Everyone. I am 16 years old and I will start applying to colleges next year. I was wondering if anyone has any information about scholarships for people with cleft lip and pallate. Feel free to email me, it would be greatly appreciated. To those who are experiencing emotional stress because their son or daughter was just born with a birth defect, shouldn't worry. If they get the correct surgeries, they will end up fine. It just takes alot of time. |
How did you hear about Cleft Advocate? | Web |
Date | 3/8/06 |
Name | luana moyer |
Homepage | |
State or Country | PA |
Comments | I HAVE A LITTLE GIRL WITH A REPAIRED CLEFT LIP AND PALIT AND SHE IS DOING FINE NOW SHE IS 16 AND WELL. |
How did you hear about Cleft Advocate? | MONTEL WILLIAMS |
Date | 5-6-06 |
Name | Sheryl |
Homepage | |
State or Country | Florida |
Comments | I have a son who was born with Cleft lip and parital aveolus missing. I heard of your website and thought I will check it out. Good luck. |
How did you hear about Cleft Advocate? | The Montel Show |
Date | March 7, 2006 |
Name | Kumar |
Homepage | |
State or Country | CA |
Comments | I am new in this country. Our daughter is now 4 and has had surgery for cleft lip and palate in India. She has tiny but visible scar and her teeth are not in order. also we have concern about her speech also. Can anybody let us know which center is best for comprehensive care of such kids in los angeles area. |
How did you hear about Cleft Advocate? | Internet |
Date | 3/2/2006 |
Name | MONA BEVER |
Homepage | |
State or Country | FLORIDA |
Comments | MY SON DEVAN WAS BORN WITH ULCLEFTLIP AND PALATE. HE IS GOING TO BE 5 MARCH 1ST AND WE ARE APROACHING ANOTHER SURGERY. I WAS TRYING TO FIND OTHER PARENTS LIKE MYSELF AND TO FIND OUT USEFUL INFORMATION ABOUT SURGEONS. |
How did you hear about Cleft Advocate? | INTERNET |
Date | FEB. 20,2006 |
Name | LaMont "Showboat" Robinson |
Homepage | |
State or Country | OHIO |
Comments | I just met a very charming and interesting fellow, we did a game in Lewisburg, Pennsylvania two weeks ago. While there, we were delighted to meet Billy Wolfe a CleftAdvocate who just gave us the story about THE CLEFT ADVOCATE project. We support you, after meeting Billy we are truly glad to do whatever we can. Please keep in touch, THE HARLEM ROAD KINGS |
How did you hear about Cleft Advocate? | Billy Wolfe |
Date | 2/20/06 |
Name | JON UZOAGBA |
Homepage | HTPP/WWW.UZOAGBA.ORG |
State or Country | LOME TOGO. |
Comments | I LOV THIS SITE KEEP IT UP OK.MAGASSSSSSSS. |
How did you hear about Cleft Advocate? | SEARCH ENG. |
Date | 18-02-06 |
Name | Monica |
Homepage | |
State or Country | Toronto (Canada |
Comments | I love your site. My daughter was born with unilateral cleft, she had her first surgery 4 months ago and just doing great, her second one is coming up on a month. Well if anyone has any question youo can e-mail me. God bless you all and you will all be in my prayers. |
How did you hear about Cleft Advocate? | From a Friend |
Date | Feb 17 2006 |
Name | terry morton |
Homepage | |
State or Country | maryland |
Comments | My daughter was born with a cleft palate and pirrie robin syndrom. She is 17 yrs old and beautiful inside and out. I am so proud of her everyday for the person she has became. |
How did you hear about Cleft Advocate? | surfing |
Date | 021606 |
Name | Joe Bailey |
Homepage | |
State or Country | California USA |
Comments | I am 19 years old, 17 surguries to fix a bilateral cleft and unilateral palet, if you have any questions, or just wanna chat, feel free to email me. |
How did you hear about Cleft Advocate? | |
Date | 02-13-06 |
Name | UWA |
Homepage | ASIYEYE |
State or Country | LOME TOGO |
Comments | I AM UWA FROM TOGO GUYS |
How did you hear about Cleft Advocate? | NICE STORY |
Date | 11 _ 2_06 |
Name | Debbie |
Homepage | |
State or Country | Illinois |
Comments | My nephew was born with a cleft palate. We are having a difficult time feeding him. It takes about an hour for him to take 3 ounces and then he is so tired he falls asleep for 30 to 45 minutes before he wants to eat again. Out of a 24 hour period he only sleeps many 4 sound hours at night. And only because he is so tired. Any sugestions on bottles that have worked for anyone? |
How did you hear about Cleft Advocate? | cleft palate search |
Date | 2/4/06 |
Name | Tiffany |
Homepage | |
State or Country | Georgia |
Comments | I am a 21yr old college student and I was born with bilateral cleft lip/palate; Ive had about 12 surgeries, and I would not take back my birth defect if I had the choice, it has made me a very strong and outgoing person, even though I was teased like many kids who are born with deformities, I was always the most outspoken kid in my class. I wanted to also let parents know that "Shriner's Hospital" is a charity that has many hospitals around the country and they help children with reconstructive/cosmetic needs. All 12 of my surgeries ranging from age 4mnths old to now have been paid for by Shriners. Their toll free # is 18008758580, also you can get information online. I just wanted to let families that are struggling know this, I am so grateful for everything they have done and wish other families the best. If you have any questions, feel free to email me. |
How did you hear about Cleft Advocate? | |
Date | 1/27/06 |
Name | Tanya Howell |
Homepage | |
State or Country | Texas - USA |
Comments | Hi - I have a 9 year old son that was born with a bi-lateral cleft lip & palate. He has already had 8 surgeries. This has totally been a learning experience not only for me, but for my family as well. He is a VERY HANDSOME young man & is getting ready to have braces put on in about 2-3 weeks. If anyone has questions regarding cleft lip & palate, please feel free to email me. Take care y'all... |
How did you hear about Cleft Advocate? | search engine |
Date | 1/26/2006 |
Name | Joe |
Homepage | http://www.geocities.com/bird2houses |
State or Country | USA |
Comments | This is really a good site. Its interesting for me and, i think, to all. Thank's for you. I hope that you will the best in birdwatching's world. Best regards. Admin of www.geocities.com/bird2houses |
How did you hear about Cleft Advocate? | |
Date | 22-01-06 |
Name | christina |
Homepage | |
State or Country | hutchinson |
Comments | i just had my baby boy and he has a clef lip and palate. and i want to know if any one has ever hard of Dr.Singhal |
How did you hear about Cleft Advocate? | my stepmom |
Date | 1/16/06 |
Name | zereen |
Homepage | |
State or Country | Canada |
Comments | I am now 7 months pregnant and just on 1oth Jan 2006 through ultrasound I knew that my coming dear baby boy has bilateral cleft lip and palate!!How shocked I was.I cried for last few days continously.Then I found this website.I would only say that this site has given me all the information I wanted to know.It is a wonderful site.May peace be upon everyone who are in the same situation like me.Now I am waiting for the days to come and I already gained a lot of energy and strength to deal with the future upcoming events.I am waiting to see the lovely face of my baby boy.Please do pray for me. |
How did you hear about Cleft Advocate? | surfing the web |
Date | 15 Jan 2006 |
Name | Rudy R. |
Homepage | |
State or Country | texas |
Comments | My daughter was born with a cleft palate and is scheduled for surgery when she is about one year old. I was wondering if anybody knows where i can purchase haberman feeders since they are quite expensive. Any information will be appreciated. THANK YOU! |
How did you hear about Cleft Advocate? | web surfing |
Date | 1-13-2006 |
Name | S |
Homepage | |
State or Country | FRANCE |
Comments | Hi everybody, Our son is born with a cleft lip and cleft palate. Hopefully this was detected very early during the pregnancy so we had time to prepare everything. Anyway we found him beautiful from the first second. He underwent the lip repair last month (aged 2.5 month) and the palate repair is planned in 6 months. I want to bring to your attention the following website dedicated to the same subject for French-speaking people : http://fente-labio-palatine.forumactif.com/ Thank you for your help. |
How did you hear about Cleft Advocate? | |
Date | 01/12/2006 |
Name | Anita Handy |
Homepage | |
State or Country | Ohio |
Comments | My son was bron with bi-lateral cleft lip and palate on March 22, 2005. My husband and I had no idea he had this condition, so we were shocked when he was born. Thanks to all the helpful information that is out there, we had to become familiar with it. Michael's first surgery was March 6 2005, he had the cleft lip repair, his smile was so beautiful. The hardest part of the surgery was on us, the parents, the baby handle it just fine. His next surgery is Febuary 15 2006, he will have his celft palate repaired then. We are nervous about the surgery, but it will benefit him so much. I am so thankful for my son, and am greatful for every smile he has. |
How did you hear about Cleft Advocate? | Montel Williams Show |
Date | 1-4-06 |
Name | Iliana Soto |
Homepage | |
State or Country | Ventura Ca |
Comments | please send information with other malformation problems like vascular malformation |
How did you hear about Cleft Advocate? | intrnet |
Date | 01/02/2006 |
Name | elizabeth evans |
Homepage | |
State or Country | arkansas, USA |
Comments | before my child was born in September of 2005 i have never heard of cleft lip or palate. but after talking to other families that have went throught what i am going through now has really helped me alot. today is his first surgery and i am scared to dealth. i know its going to be fine but i just don't like the idea of a child or a baby going through surgery. |
How did you hear about Cleft Advocate? | tv show |
Date | 12-30-05 |
Name | DONJJ1MAGAMUGU |
Homepage | |
State or Country | LOME TOGO |
Comments | I DON DEY HERE O LOME TOOGO MAGA MUGU NICE SITE GOOD AND LOVELY SITE TRO VISIT |
How did you hear about Cleft Advocate? | BY A GOOD FRIEND |
Date | 27/12/2005 |
Name | saul nadel |
Homepage | |
State or Country | new york |
Comments | Hey I am 16 years old and I live in NYC. I have gone through a lot in my life and I am starting to prepare for college. I am wondering if there any scholarships avaiable for me. I would appreciate it greatly. |
How did you hear about Cleft Advocate? | web |
Date | 12/25/05 |
Name | MGBADA IGBO |
Homepage | |
State or Country | LOMETOGO |
Comments | We are Christians and believe in the power of prayer! Anyway, my question is this: can the cleft show on The doctor was apparently watching it all along, but never said anything until the last minute. We never knew he saw anything. Of course he knew what to look for and we didn't! But it does show on the ultra sound??? |
How did you hear about Cleft Advocate? | Through internet |
Date | 14-12-2005 |
Name | Shari Shell |
Homepage | |
State or Country | Oregon |
Comments | My grandson, Tanner was born a year ago, this December with a bi-lateral cleftlip and pallet. I am so excited to share this information with my children, as they continue to work with professionals to meet Tanners need. Thank you for being a support to so many. |
How did you hear about Cleft Advocate? | Montel Williams |
Date | 12/13/05 |
Name | Big Beat Battalion |
Homepage | www.bigbeatbattalion.com |
State or Country | USA |
Comments | What a wonderful cause. Best wishes, and we hope you share a million smiles with the world. big beatbattalion Smooth J and Grammar G |
How did you hear about Cleft Advocate? | online research |
Date | 12-13-2005 |
Name | Casey Gore |
Homepage | myspecialface.com |
State or Country | Delaware |
Comments | I just thought that it was time for me to sign the guest book. I am mom to Bryttani and her story is on the featured family page, her picture is in the gallery too. This website and the family to family connection has been a blessing to us. It gives us the chance to help others and also to get our encouragement when we need it. Debbie, you are wonderful for all you do. |
How did you hear about Cleft Advocate? | CCA |
Date | 12/12/2005 |
Name | Tricia |
Homepage | http://corndog.gotdns.com/Boat2004.htm |
State or Country | Wisconsin, US |
Comments | I'm so glad we've found the cA web site. My husband is 30 and has a unilateral cleft lip and palate. He recently had a bone graft from his hip to his mouth and it is going well. We'd be glad to share the doctor's name for anyone in the Minenapolis area. We are expecting a baby and the little one is due in March '06. |
How did you hear about Cleft Advocate? | |
Date | December 8, 2005 |
Name | Chris Wall |
doihavetosaydotcom | |
Homepage | |
State or Country | australia |
Comments | i have a clefy pallet, always felt like a bit of a mutant but finally relaxing a bit (im 30!) i have never considered having kids because i wouldnt want to put them through my own neurotic nonsense about the lip thing...then a friend told me the other day that it can only be passed down through the mum. is that true??? if it is it koinda changes my outlook on life... |
How did you hear about Cleft Advocate? | |
Date | 8/12/05 |
Name | Amanda Oliver |
roxiechick119 | |
Homepage | |
State or Country | Las Vegas |
Comments | As as some of you all know my mom is Debbie Oiver. Ithink she does a great job helping everyone with there needs. She does a great job being a mother and being someone that helps others. Even though she spends a lot of time helping other people I know that she still loves me. I don't know what I would do with out her. |
How did you hear about Cleft Advocate? | She is my mom |
Date | 12-6-05 |
Name | shelly |
Homepage | |
State or Country | IL |
Comments | It's about time I come across a website that will hopefully help my family deal with this situation we are hoping to find people to talk to and meet. |
How did you hear about Cleft Advocate? | University of Chicago Hospital |
Date | December 4, 2005 |
Name | Kathleen & Dennis Miller |
Homepage | |
State or Country | Ohio - United States of America |
Comments | This is a great site we wish we would have had this site when our son was born because no one knew what to do and how to care for him. thank you so very much and I am glad to be a part of it. |
How did you hear about Cleft Advocate? | Oprah show |
Date | 12/04/05 |
Name | ALI |
Homepage | n/a |
State or Country | Kingdom of Saudi Arabia |
Comments | Hi, Would you please provide us with the below items: 1-Mead Johnson Bottle with Nuk Nipple 2-Mead Johnson Bottle w/ Ross Syringe Nipple Please let us know as soon as possible Tel: 00966505826754 Kingdom of Saudi Arabia E-mail to: kaabiak@aramco.com.sa Appreciate very much you cooperation and help. Ali |
How did you hear about Cleft Advocate? | yahoo search |
Date | 12/03/2005 |
Name | Christina |
Homepage | |
State or Country | Hutchinson |
Comments | I am 18yrs old and I am pregnant. My baby has a cleft lip and palate. This is my frist baby and I am scard. At frist I had no clue what my doc was telling me. All I want to do is cry. But I cant wait to see him I am 30 weeks. I want to see him so bad but at the sametime I am scard. I dont know what to do on if I should cry or what. |
How did you hear about Cleft Advocate? | my step-mom |
Date | 12/2/05 |
Name | Candace Bellamy |
Homepage | |
State or Country | Canada |
Comments | I have a 7 year old son Christian who was born with unilateral cleftlip and palate. Christian is the 3rd of 4 children and he was the only one born with this defect. He has had his share of ear infections but otherwise a healthy very outgoing boy. I want you all to know that I breastfed this beautiful baby boy until he was 4 months old. I nursed 2 children before him and was determined to do this with him. We had no problems but it took time and patience and bottle supplements with nuk nipples for him. Thank You to Montel, a true subject talk show host! |
How did you hear about Cleft Advocate? | Montel Williams |
Date | Dec 1 2005 |
Name | Andrea Fraser |
Homepage | |
State or Country | Canada |
Comments | I was watching Montel Williams today. I was born in 1978 with a bi-lateral horseshoe cleft palate, but I was lucky I did not have the cleft lip. I was two days old before it was known I had a cleft palate. I heard on the show today that some places still don't have the proper equipment to feed new babies. I'd like to share about my dad. He was the one who figured out how to feed me by going to a farm supplies store and purchasing sheeps-nipples to be put on my bottles and this worked because the nipple went down to my throat and my parents could drip milk in. Maybe this could help other parents. |
How did you hear about Cleft Advocate? | Montel Williams |
Date | Dec.1st 2005 |
Name | Kimberly Wickham |
Homepage | |
State or Country | New York |
Comments | As I was on the internet this morning, the Montel Williams show was on. I wasn't watching intently but I was listening to all the different guests when I heard about the woman advocate for Cleft Lip/Palate. I was born with a Cleft Lip/Palate in 1978. I had several surgeries with the last one in 1992. It truly was difficult growing up being different than all the other children. We all know how harsh society can be but, society is that way due to lack of knowledge. So, I wanted to comment on this woman for her hard work and effort to educate America on this. Even though I have never heard of this website before, I have always thought that people should be informed about birth defects regardless of their nature. The one good thing I can say about being born with a Cleft Lip/Palate is that, even though I had such a hard time during childhood being teased, I am a very strong, confident, outgoing and cheerful person. My face isn't perfect as a models face but, my face is unique and fits my personality. I just want to say to families that have children with Cleft Lip/Palates, please encourage them to be confident in themselves, help build their self-esteem, take them out into public, show them off. They are your children, a miracle of life and should be treated as such. Thank you for giving people the opportunity to realize they are not alone in this. You truly are a wonderful gift from above. Thank you so much. Sincerely , Kim |
How did you hear about Cleft Advocate? | Montel Williams |
Date | 12-01-05 |
Name | Kelly |
Homepage | |
State or Country | IL |
Comments | I have a daughter that is now 8 years old. The day before the doctor induced labor with her, he told us that she would be born with a cleft lip and palate. To make a long story short, after hours and hours of prayer and meeting the daughter of a minister with the condition and more prayers, she was born just fine - with one side of her upper lip bright red! We believe she is a miracle!!! We are Christians and believe in the power of prayer! Anyway, my question is this: can the cleft show on the ultra sound? The doctor was apparently watching it all along, but never said anything until the last minute. We never knew he saw anything. Of course he knew what to look for and we didn't! But it does show on the ultra sound??? |
How did you hear about Cleft Advocate? | Montel |
Date | 12-1-05 |
Name | Lori Young |
Homepage | |
State or Country | Colorado |
Comments | Hi, I am a 42yr. old female who was born with cleft lip and palate (back in 1963) because of the blessed success of my operations and treatment I have always wanted to be an advoccate or to be able to assist in someway those who have been born with this and need help, encouragement and anything I can offer. I was pleased to see this on Montel and would love for you to contact me and allow me to become a part of the advocacy team. Thank you, Lori Young |
How did you hear about Cleft Advocate? | montel dec. 1 |
Date | dec. 1, 05 |
Name | Nikita Davis |
Homepage | |
State or Country | Det, MI |
Comments | I have a 9 year old son who was born with a cleft palate. when I was informed that he was going to be took over to children's hospital, I didn't know what to think. I didn't know if it was a really serious issue or what. I was only 17 years old and did not know what questions to ask. Now malik seems to be doing pretty well although he has ear tubes and sometimes get ear infections , things seem pretty good. I"m glad that there is a website that I can go to when I have questions about his condition and not feel alone. |
How did you hear about Cleft Advocate? | Montel Williams |
Date | 12-01-2005 |
Name | Benita Blackwell |
Homepage | |
State or Country | Georgia |
Comments | I was born 39 years ago with a cleft lip & palate.I have had 9 operations. I wish there would have been more available information when I was growing up.I also have a younger sister who was born with a cleft lip. My 3 other sisters were normal.When I was pregnant my biggest fear was that my baby would be born with a cleft lip or palate,but he was fine. |
How did you hear about Cleft Advocate? | I watched the Montel show |
Date | 12/01/2005 |
Name | kelly |
Homepage | |
State or Country | GA |
Comments | well now Im awful I have never signed the guest book hahaha I am so glad that Debbie was chosen and Cleft Advocate tyo be on Montel today and I am so glad I was able to be a part of it all Kelly Lanham |
How did you hear about Cleft Advocate? | Years ago |
Date | 12-1-2005 |
Name | Robin Beard |
Homepage | |
State or Country | Ga |
Comments | Daughter Bethany (4 years old now) born with cleft lip |
How did you hear about Cleft Advocate? | Savnnah Ga newspaper |
Date | 12-01-05 |
Name | mathias |
Homepage | |
State or Country | germany |
Comments | very helpful site. thanks |
How did you hear about Cleft Advocate? | friend |
Date | 27.11.2005 |
Name | Chrystal Johnson |
Homepage | |
State or Country | Pennsylvania |
Comments | Our one month old son was born with a wide complete UCLP. The cleft was not picked up on routine ultrasound and was a total shock to us upon delivery. Even though I am a nurse I knew very little about cleft defects and treatments at the time. The hospital that I delivered at apparently shared my ignorance as they took our son to the NICU immediately and I did not get to see him again for 8 hours,at which time they decided to transfer him out to Children's. I spent the first three days at the NICU crying every time I looked at my little boy, I felt so bad for everything he must go through in the future. Thank heavens he is eating very well with a pigeon bottle and gaining weight (he's over 10 lbs now). I'm pumping and bottle feeding him breastmilk. All attempts at nursing just make him very angry. He was fitted with a NAM at 3 days old and the nose portion was just added this week. I am starting to see a big difference in his gumline already. I am shocked to read how many surgeries some of these children have went through. I know our little one will have at least two. He already has problems with fluid in both ears, no infections though. It doesn't seem as though he can hear now, though he did pass his initial hearing screen. So many things to worry about...But on the bright side he has won the hearts of all of his family and made us realize how much we take for granted. Our thoughts and prayers go out to everyone affected by this. |
How did you hear about Cleft Advocate? | Craniofacial team at Children's of Pittsburgh |
Date | 11/26/2005 |
Name | val walker |
Homepage | |
State or Country | PA |
Comments | Hi. I was born 39 yrs ago with a bilateral cleft lip and palate. This site is wonderful. I so wish that they had offered more groups for parents and children with this when I was growing up! I've had numerous surgeries, and though it was tough on me physically sometimes, I think it was harder on my mother! My son has a submucous cleft palate, which will be corrected within the next couple of months. God Bless you all! Valerie |
How did you hear about Cleft Advocate? | through Mobius Syndrome |
Date | 11/23/05 |
Name | Joyce Hartman |
Homepage | |
State or Country | Texas |
Comments | No particular comments - just a "May God Bless You All" for helping these precious babies. Joyce Hartman DFWBandsters |
How did you hear about Cleft Advocate? | DFWBandsters |
Date | 11-21-2005 |
Name | jessica |
Homepage | |
State or Country | vermont |
Comments | I have a son who is 10 months right now and is going to have surgery on the 30th of this month and i am scared..Of what i am going to have to deal with the days fallowing it..I am not sure what to exspect..and i am a single mother with another child who is 5..just would like some info on what i should be ready for.. |
How did you hear about Cleft Advocate? | i just looked up the site |
Date | 11/20/05 |
Name | Melissa |
Homepage | |
State or Country | TN |
Comments | My daughter was born on 7/8/05 with a soft cleft pallet. We are awaiting surgery hopefully in February. She keeps a snotty nose, is this normal? Everytime we go to the doctor, everything gets blamed on the pallet. |
How did you hear about Cleft Advocate? | Web Searching |
Date | 11/18/2005 |
Name | Judy Roberts |
Homepage | |
State or Country | Texas |
Comments | My son was born in 1988 with a unilateral cleft lip and palate. He's done with all his surgeries. woohoo. We have one last visit to his team in Jan 2006 then we're all done. Those of you with newborns... I know exactly what you're going through. I'd just like to give you some hope. My son has never had a speech problem because we followed the speech therapist instructions from the start. This is very important. We were blessed to have a superb team of doctors also. My son is now in his senior year of school and he has played the clarinet for 6.5 years. Not only that but he is the first chair section leader of a 205 member band with 30 clarinets. So you see, it is possible to play a wind instrument (and very well at that) even being born with a cleft. My son has had at least seven operations and lots of orthodontic work. His last surgery was rhinoplasty. At the age of 8 and 10 he had bone graphs. I'd be happy to correspond with any parents needing advice, suggestions or just an understanding ear. Please feel free to email me with any questions you may have. I'm not often online surfing, or checking message boards, but I do check my email everyday. |
How did you hear about Cleft Advocate? | |
Date | 11-16-2005 |
Name | Kari Kvidera |
Homepage | |
State or Country | Minnesota |
Comments | My Son was born Sept 1999 with BCLP, next surgery June 2006 Bone graft! |
How did you hear about Cleft Advocate? | Updating info from years ago |
Date | 11-8-2005 |
Name | Ngbada Onyeolu |
Homepage | gat no one |
State or Country | Lome-Togo |
Comments | AM HERE AGAIN BYE BYE EGO MAGA |
How did you hear about Cleft Advocate? | SEARCHING |
Date | 08-10-05 |
Name | Autumn Bradham |
Homepage | |
State or Country | ct |
Comments | My daughter was born with a cleft palate and we are awaiting her surgery this summer. I'am currently looking for pigeon bottles for her feedings. if you have any suggestions please feel free to email me. Thanks A |
How did you hear about Cleft Advocate? | |
Date | 11/7/2005 |
Name | ember&austin |
Homepage | |
State or Country | lasvegas |
Comments | I recently am learning about cleft i have a five mounth old baby boy named austin who was born with the condition,im surprised to learn what good natured he is and so very special. |
How did you hear about Cleft Advocate? | doctors |
Date | nov 8,2005 |
Name | MR.NGBADA ONYEOLU |
Homepage | no one |
State or Country | Lome-Togo |
Comments | i love the site |
How did you hear about Cleft Advocate? | searching |
Date | 08-10-05 |
Name | mugu man |
Homepage | |
State or Country | usa |
Comments | i love the site. |
How did you hear about Cleft Advocate? | search engine |
Date | 07/11/2005 |
Name | Kiku |
Homepage | www.kikucollins.com |
State or Country | New York |
Comments | I probably signed this years ago, but I just want to say that I love cleftAdvocate! This family has gotten us through so much more than just surgeries! I'm so looking forward to the Montel show! XOXOXOXOXO |
How did you hear about Cleft Advocate? | Me! |
Date | October 30, 2005 |
Name | Angela Nixon |
Homepage | |
State or Country | Florida |
Comments | I am so glad I have found this site. I enjoy chatting about things in the chat room with all the moms. I have learned alot and am greatful. Thanks Debbie!!!! |
How did you hear about Cleft Advocate? | did a search engine |
Date | 9/28/05 |
Name | Billy Wolfe |
Homepage | |
State or Country | Pennsylvania |
Comments | I would like once again to thank all of those working hard, to fight for those that have been born with either a cleft palate or cleft lip. Thank you from my heart to yours, allow me to hear from you when you have the time. Paul "Billy" Wolfe Box#443 Lewisburg, PA 17837-0443 USA paulwwolfe@yahoo.com |
How did you hear about Cleft Advocate? | The Wedsite |
Date | 09-23-05 |
Name | Debbie Oliver |
Homepage | http://www.cleftadvocate.org |
State or Country | Nevada |
Comments | Thanks to everyone for your Guestbook entries dating back to February 2002! From this point forward we will ask for the date you are visiting the website. Keep spreading the word about cleftAdvocate! |
How did you hear about Cleft Advocate? | Founder |
Date | September 21, 2005 |
Name | Ann Klock |
Homepage | |
State or Country | Illinois |
Comments | I am a mom of a 6 month old little girl, born with a cleft lip and palate. She had her lip surgery done at 3 mo. of age and her palate surgery is due to be done Oct. 14 '05, when she is 7 1/2 mo. She is doing incredibly well. She was crawling and pulling herself up to stand in her crib 2 weeks before 6 mo.age. I am so proud of her strength. I see good things happening for her. |
How did you hear about Cleft Advocate? | Lynne Riley |
Name | Rudy |
Homepage | |
State or Country | Texas |
Comments | My daughter was born with a cleft pallet. This is our first day at home with our daughter, she was hospitalized for a week after birth. My wife and I would like any suggestions, advice on what to expect. Please!!!!!!! Email me on any info that will help us out. Thank you! Rudy |
How did you hear about Cleft Advocate? | aol search engine |
Name | amanda clouse |
Homepage | |
State or Country | oklahoma |
Comments | i want to thank debbie and allthe others for there calls and bottles and nipples,our son mason is eating alot better.god bless all of you and your children. |
How did you hear about Cleft Advocate? | cleftline.com |
Name | OBINNA |
Homepage | |
State or Country | ACCRA/NIGER |
Comments | COOL SITE MGBADA AND HI TO GUEST. |
How did you hear about Cleft Advocate? | SEARCH ENGINE |
Name | Kay Inglis |
Homepage | |
State or Country | Michigan |
Comments | I AM VERY HAPPY AND HOPE TO BE A PART OF CLAP I AM SEVENTY YEARS OLD AND WAS BORN WITH BILATERAL CLEFT AFFECTING NOSE I HAD SURGERY AT THE YOUNG AGE OF 3DAYS I HAVE HAD MANY SURGERIES AND I HAVE PERFECT SPEECH WHICH IS A FEAT BEING BORN AT THE TIME THAT I WAS. IF I CAN BE OF ANY HELP TO ANYONE WITH CLEFT QUESTIONS I WILL BE GLAD TO ANSWER SO GLAD TO FIND THIS PAGE. THANK YOU KAY INGLIS |
How did you hear about Cleft Advocate? | SOMEONE PUT MY NAME IN AND WHOEVER IT WAS I THANK THEM |
Name | Cathy Antolos |
Homepage | |
State or Country | ca |
Comments | We just had a family member in Croatia have a little girl with a severe cleft that involves the nasal passage on one side. +Does anyone know of an organization that can help. |
How did you hear about Cleft Advocate? | searching |
Name | Huston Mattson |
Homepage | |
State or Country | PA |
Comments | I am an 18 year old student at Duquesne University. I was born with a uni lateral cleft lip and pallet. I always used to be self conscience about my look because i was "different" then all of my friends. Now i have realized that I am actually the same as them. I may look a little different but i am still same in every other way if not even better. Hopefully everyone else feels the same about themself. You may have been born with a "deformity" but you do not have to let that run ur life at all. Everyone may not look the same but you just have to make the most out of your life. My parents have always told me to never let people get to me and I never have. Now that i am at college most people do not even know that i have this. I hope everyone else will feel the same way about this. |
How did you hear about Cleft Advocate? | searching the internet |
Name | Doedee36@aol.com |
Homepage | |
State or Country | USA |
Comments | God bless each and every one of you. Doedee36@aol.com |
How did you hear about Cleft Advocate? | search engine |
Name | betty johnson |
Homepage | |
State or Country | georgia, united states |
Comments | hi, I have a 2 year old little boy that was bron on feb 17, 2005 with a bilateral cleft lip and palate. It has been a wild lerning experiance. He has tought me that I used to take so many things for granted. Think about it these little ones are born with this and got through so much even before they are 1 year old and yet they don't let it bother them for more than a couple days.I love my son for every thing he is and for everything he has tought me. When i had him I didn't know know he was going to be born with it because they did not catch it on my ultrasound. So to my suprize I didn't even notice it when I looked at him all I saw was beautiful little boy. It did not hit be untill I found out they had to take him to a hosptial 1 hour away. When I brought him home it was the happiest day of my life and to think that so many people want to stare and talk about something they know nothing about shows just how ignorant some people are. So when I saw someone staring I would ask them if they would like for me to explain it to them and it would change their whole perspective. If any one, new parents or not, have any questions on what to look foward to e-mail me and I will be happy to talk to you. |
How did you hear about Cleft Advocate? | browsing |
Name | Brianna |
Homepage | |
State or Country | PA |
Comments | Hello! My name is Brianna L. I am from York, PA and I am a 22yo college student studying pre-med with the hopes of one day becoming a pediatric reconstructive surgeon. I was born with a severe unilateral cleft lip and cleft palate. I am currently writing a book - part autobiography, part educational tool for children. There really is no printed resource out there strictly for children born with cleft lip and cleft palate. I want to address the fears and questions children with cleft face. If you are a parent or a child who would like to share questions your children have asked you or questions you as a child have about cleft, please e-mail me at blantzy@ycp.edu. I would love to have your input in my book which I hope to have published within the next 2 years. Thank you so much! Brianna L. |
How did you hear about Cleft Advocate? |
Name | Cindy Sines |
Homepage | |
State or Country | Ohio USA |
Comments | glad to have support from families with the same issues cindy mom to Nikolas, uclp and fnd |
How did you hear about Cleft Advocate? | surfing the web |
Name | Christy Barnes |
Homepage | |
State or Country | Oklahoma |
Comments | I found this webiste while searching for information about my son's cleft. He was born on February 23, 2005. There was little support for us and it made me crazy. I just searched the internet until I found this site and it has been wonderful! I am looking to become a pathfinder so that I maybe be able to help other avoid the very frustrating period that we went through. |
How did you hear about Cleft Advocate? | internet search |
Name | Nicole |
Homepage | |
State or Country | Minnesota, usa |
Comments | Hi im nicole i was born with a cleft lip and pallett in 1983 i am 22 now i have had surgery after surgery i though i was the only person in the world with this untill recently i heard that its pretty common to happen in some cases...i am truly seeking a pen pal that has the same thing that would not mind talking about what all they have went thew in life and as well as me sharing what i have been thew..... |
How did you hear about Cleft Advocate? | searching the web for it |
Name | Steven Wakefield |
Homepage | |
State or Country | United Kingdom |
Comments | I was born with a hair lip and cleft palet in 1957 (that makes me 47 now). My parents were told that it was unlikely I could make a serious contribution to society. They were also told that I would never be able to speak properly. Well I am now 47 years old, I am a Sales Director for a major corporation and have a wonderful 20 year old daughter. How do I make my living? On the phone! My message to all parents who have had a baby who has a hair lip and cleft palet is simple, dont worry the world is still their oyster. |
How did you hear about Cleft Advocate? |
Name | Abigail T. Tapangan |
Homepage | |
State or Country | Cebu City, Philippines |
Comments | I have a 2 month old daughter who is born with a unilateral cleft lip and palate. The sites here are very much informative especially with regards to the different feeding bottles and nipples that would help a child with a cleft. I am still looking for an organization that would help correct my baby's deformity. Thank you for creating this website, it is indeed a very helpful tool for those families having children who are not born normal but yet are really SPECIAL. |
How did you hear about Cleft Advocate? | internet |
Name | Angela |
Homepage | |
State or Country | New York |
Comments | Just recently I heard that I'm believed to have a tortise or torres palete. It sort of looks like my palete includes half-egg shape portion. Can you give me any info or can you tell me where to get info. Tx |
How did you hear about Cleft Advocate? | website |
Name | Debbie Oliver |
Homepage | http://www.cleftadvocate.org |
State or Country | Nevada |
Comments | For those of you who have already registered, information packets are on their way to your mailboxes (snail mail) right now! But if you just can’t wait to see what we have in store for you, then head over to the NACFC Information and registration page and look for the yellow star... North American Craniofacial Family Conference (NACFC) http://www.cleftadvocate.org/NACFC2005Registration.html There you’ll find a link to the conference itinerary...and I think you’ll approve. If you haven’t yet entertained attending, perhaps this will persuade you! Let me know if you have any questions...see you in Las Vegas! Regards, Debbie Oliver, Program Director cleftAdvocate, a program of AboutFace USA debbie@aboutfaceusa.org www.cleftadvocate.org |
How did you hear about Cleft Advocate? | I'm the Founder! |
Name | phil white |
Homepage | |
State or Country | uk |
Comments | thank for this site its nice hear from people who got cleft pallet. i was born with a cleft pallet and hair lip, i am 23 now i gone though most of my ops. now got a couple left which involve my nose. i was hoping if anyone could help me with a question? i am just wondering if i can pass my cleft pallet on to my future children or is it a one off thing. also if anyone got any question i would be more than willing to help. once again thank you for this site |
How did you hear about Cleft Advocate? | luck |
Name | Erik Keno |
Homepage | |
State or Country | Gresham,Oregon |
Comments | I am 22 years of age and was born with a cleft lip and pallet.I have had 4 or 5 surgeries starting from the age of three months with probably one more touch-up surgery i will have done within the next year or so.I am very pleased so far with my appearance it honestly has never came in the way of dating or sports and activties along that line.Ive had the same surgon since day one his name is Carl Westrack and would recomend him to anyone that has any surgeries that they need or need to fixed from a previous disliked or for someone that is unhappy about the outcome of a previous surgery. He is wonderfull for anymore info email me at ryankeno@comcast.net |
How did you hear about Cleft Advocate? | search from google |
Name | Erik Keno |
Homepage | |
State or Country | Gresham,Oregon |
Comments | I am 22 years of age and was born with a cleft lip and pallet.I have had 4 or 5 surgeries starting from the age of three months with probably one more touch-up surgery i will have done within the next year or so.I am very pleased so far with my appearance it honestly has never came in the way of dating or sports and activties along that line.Ive had the same surgon since day one his name is Carl Westrack and would recomend him to anyone that has any surgeries that they need or need to fixed from a previous disliked or for someone that is unhappy about the outcome of a previous surgery. He is wonderfull for anymore info email me at ryankeno@comcast.net |
How did you hear about Cleft Advocate? | search from google |
Name | Anthony &Liz Covello |
Homepage | |
State or Country | CA |
Comments | We were shocked when our third son was born with a cleft lip and palet. He is five months old now and has had one surgery. He is scheduled for another in May. Wow what a life changing experience. He is healthy and beautiful.we feel so blessed and would love to hear from those that have experinced the same. |
How did you hear about Cleft Advocate? | surfing the net |
Name | Eusebio |
Brousseau | |
Homepage | http://palm.infos-master.com |
State or Country | USA |
Comments | Your site is interesting. Thank you. back |
How did you hear about Cleft Advocate? | Brousseau |
Name | Randy Zacharias jr. |
Homepage | Randy.com |
State or Country | Ohio,United States |
Comments | I need MORE INFORMATION |
How did you hear about Cleft Advocate? | My sister has it |
Name | tina |
Homepage | http://www.frombabylon.com |
State or Country | germany |
Comments | it's nice to be here visit www.frombabylon.com |
How did you hear about Cleft Advocate? | internet |
Name | malaga |
Homepage | http://www.demalaga.net/ |
State or Country | malaga |
Comments | Thank you very much for the info I was looking for, and Greetings from Malaga (Spain). Antonio |
How did you hear about Cleft Advocate? | uncle google |
Name | Carmen |
Homepage | http://www.equineseek.com/ |
State or Country | Quebec, Canada |
Comments | Congratulations, I love it very much. I really appreciate your work here, I think it will serve to many for inspiration and as a good information source. |
How did you hear about Cleft Advocate? |
Name | Suzanne Larkowski |
Homepage | |
State or Country | Colorado |
Comments | My son was born with a bilateral cleft lip and palate. I was wondering if anyone knows of any scholarships for kids with clefts. It has been an expensive BUT VERY worthwhile couple of years. He has had 4 surgeries since July 2003. If you know of any scholarships could you let me know. Thanks |
How did you hear about Cleft Advocate? | just searching |
Name | jacqueline |
Homepage | |
State or Country | Maryland |
Comments | My daughter Amber was born with a cleft lip and palate.She is 8 years old.Had no idea what a cleft was until she was born.She has made me a better parent and all around a better person.I love her with all that I am. |
How did you hear about Cleft Advocate? | customer |
Name | Maria |
Homepage | |
State or Country | Michigan |
Comments | I was born with a cleft pallet, I struggled thru school, being teased, boys not really liking me because of my speech etc. I am now 33 years old, I had my cleft repaired when I was 17. I was worried my kids would be born with a cleft and both my kids are very healthy. I have been married for 16 years. |
How did you hear about Cleft Advocate? | search |
Name | cora |
Homepage | http://www.mo-net.com |
State or Country | Missouri |
Comments | I have a 13 year old daughter her name is Jenalee. She is a very beautiful young lady, but is struggling very hard with her speech. |
How did you hear about Cleft Advocate? | on the internet |
Name | Mark |
Homepage | http://rose5111.typepad.com/ |
State or Country | tampa |
Comments | Great site, thanks for letting me sign your guest book! |
How did you hear about Cleft Advocate? | search engine |
Name | Cierra Abbington |
Homepage | |
State or Country | Ohio |
Comments | Hey I was thinking of donating to operation smile, but I want more information on cleft lip and pallet. I found a sight that said that they think cleft lip is caused by faulty migration of the mesoderm to the head region, but had no information on what causes cleft pallet. If anyone knows, or could give me a site that explains it please dont hesitate to e-mail me. Thanks so much!! |
How did you hear about Cleft Advocate? | Google search engine |
Name | krankenversicherung |
no | |
Homepage | http://www.nrg.to/krankenversicherung/ |
State or Country | no |
Comments | This site is very useful. Keep up this excellent work - very good. krankenversicherung here it is krankenversicherung thank you. |
How did you hear about Cleft Advocate? | no |
Name | Emily Ann |
Homepage | NA |
State or Country | United States |
Comments | My name's Emily, I'll be 17 in november, and i was born wist a cleft lip. I love my lip because I'm diffrent, even though I've never been treated that way. I'm waiting to meet with my plastic surgan about my forth surgery, and I can't wait. My lip has helped me grow into the person I've become, and it breaks my heart to know that some kids are treated horably for this. I wish this issue could be realized by the public so that organizations like smile could be able to help more kids. That is my life's goal, if I don't become famous this would be enough. My best wishes to all of you, and realize how lucky we really are -Emers- |
How did you hear about Cleft Advocate? |
Name | Anne Fabing |
Homepage | |
State or Country | IL |
Comments | My 17year old daughter is the oldest of my 5 children and was born with a cleft lip and bilateral cleft palate. She was fitted with an obturator at 2 weeks, had her lip closed at 2 months and her first surgery on her palate at 11months. She spent 2 years in speech therapy (1-3 years old). She has had a life long relationship with her orthodontist Dr. Sheldon Rosenstein in Chicago whom we have seen once a month since she was 2 weeks old. Our cleft palate team was through Children's Memorial Hospital and covered by my husband's insurance at Sears. My daughter is beautiful and confident and plans a career in Genetics. I would like to tell new parents that although you may seem overwhelmed now, it does become easier and almost routine later. A lot of what how your child's self esteem and outlook develop will depend on your ability to maintain a postive sense of normalcy throughout your child's life. I am extremelly proud of my daughter's strong character and empathy for others. I grieved for the child my daughter wouldn't be while she was just a baby, and then moved on to focus on who my daughter would be since then. |
How did you hear about Cleft Advocate? | brochure from doctor |
Name | Jeff Alterman |
Homepage | |
State or Country | Hastings-on-Hudson, New York |
Comments | I think that this is a great site where those who have been affected by a cleft can be of touch with others who have had to deal with a cleft. My cleft is very mild and I describe it in detail in my story that is in the featured families section of the website. Outwardly, my cleft isn't very noticeable and at worst, one would have to have a very sharp eye to see the tiny notch on the right side of my upper lip that appears on occasion. My speech is a little affected, but otherwise it doesn't sound to far from normal. Unlike perhaps many of the cleft affected people mentioned on this website, I am developmentally challenged with a mild form of autism (Asperger's Syndrome) so I had a far number of problems because of it. I have found it hard at times having to live with both a mild cleft and my mild autism, but at the same time I also think about how I managed to adapt to being different and trying to do the best I can under the circumstances. I have learned that there isn't necessarily anything wrong with being different, it is just simply trying to be as much like everyone else at best as possible. Sure, I have some limitations, but they haven't prevented me from living as full of life as possible. I wish everyone who posts messages on this message board the best. Jeff Alterman |
How did you hear about Cleft Advocate? | Google? |
Name | Lori |
Homepage | |
State or Country | Washington |
Comments | I have loved all the information on this site. My 6yr daughter was discovered to have a split soft palet this summer and is going in for surgery on wed. She is so old to be having the first of what could be many surgerys. I am a bit overwelmed about the recovery time and for her to be on a liquid diet for three months. Does anyone have some good recieps that are healthy that she may like or any suppliments for normal food. IS there any other parents that have had kids with surgery of this size on a older child? TO ALL OF YOU THAT HAVE TOLD YOUR STORIES-THANK YOU AND MAY GOD BLESS YOU YOU HAVE GIVEN ME GREAT COMFORT |
How did you hear about Cleft Advocate? | SURFING |
Name | susan |
Homepage | |
State or Country | ga |
Comments | Hi, My granddaughter is a week old today - she has a soft cleft pallet. Of course, our whole family has questions, but there is so little information on the internet which I find surprising when there are 1 in 700 babies born with this condition. Thanks, Susan |
How did you hear about Cleft Advocate? | surfing internet |
Name | pat Miolen |
Homepage | |
State or Country | georgia |
Comments | my stepdaugter is 17 and just had surgery to try to close the hole in the roof of her mouth. she was born with a bilateral cleft pallet and has had many surgeries. She also has aplastic anemia and an auto immune disease that has kept some of the grafts from taking. She just went through having her tounge sewed to the roof of her mouth in hopes of a sucessful graft. It did not go well. we are having a lot of emotional problems. She is a beautiful girl, but the steriolds for the blood disease make her face swell and her lips are swollen from surgery and she has no feeling on the left side and is afraid it will be permament. It has been just a week since they cut her tongue lose and unwired her jaw. So we are still hopeful but it has been too much emotionally I fear. |
How did you hear about Cleft Advocate? | I searched the web |
Name | Kara |
Homepage | |
State or Country | Illinois |
Comments | I was born, 19 years ago, with a cleft lip and palate. It was a great shock to everyone. My mom questioned herself as to what she had done wrong. With information from my doctors, she learned that she had no control over it. The next step was to fix the problem at hand. To make her daughter the normal, beautiful little girl she had pictured throughout her pregnancy. She took me to the cleft palate clinic at Lutheran General Hospital in Park Ridge, IL where I was born. There she met with a plastic surgeon, dentist, and audiologist. The plastic surgeon outlined for her the surgeries I would need even past the age of sixteen while I was still unable to lift my head in her arms. I had braces for nine years. After seeing the first orthodontist for five years, I begged my mom not to take me to the second orthodontist. But, I had to go since my whole row of top teeth were shifted to the left about two inches. My two front teeth were now my two left teeth. The frist orthodontist suggested caps. Caps would have been more expensive than braces, so I was quite angry that my final result was never even discusses. We just trusted him. I mean, I had been seeing him since birth. My second orthodontist found a tooth cemented in the roof of my mouth. He thought that he coul move my top teeth back to where they should be and then pull the tooth down into place with a chain connected to my braces. He had seven teeth removed. Two permanent molars, four wisdom teeth, and two teeth in the front. Well, four years later (now) the tooth in the roof of my mouth is still there, but the agressiveness of pulling it has created a fistula which is quite uncomfortable. My teeth are in the correct position, but there is a two inch gap on the left of my two front teeth where the tooth in the roof of my mouth should be. Since my orthodontist took out two molars I have gaps in my teeth that make any kind of eating really uncomfortable, not to mention the arthritis in my jaw caused by TMJ. I also can't breathe out of my nose since it has collapsed after my last surgery in 2002. The doctor who fixed my nose also suggested a chin implant to balance out my face. My mom and I both thought this was a good idea so I had one put in. To this day I can't touch my chin. It hurts so bad that if I do touch it I feel nauseas and like I'm going to pass out. I went back to the cleft palate clinic to talk to this doctor and he just doesn't take medicaid end of story. There is no funding for the roughly 30,000 dollars I'm going to need for these surgeries. Insurance has always covered everything without question and all of a sudden it won't. I just want to eat and breathe and live without pain like everyone else. And, I can't. If anyone has any advice, please email me back. |
How did you hear about Cleft Advocate? | Children's Craniofacial Association |
Name | Whitney |
Homepage | |
State or Country | Louisiana |
Comments | My name is Whitney. I was born almost 17 years ago with a cleft lip and pallet. A state program has paid for all of my operations and dental/ orthodontic work since the day I was born. I feel so blessed for that. I have had 7 operations so far with another one on the way, and have had braces since I was 10 years old. I don't know what is so different about my situation, but I have never viewed my birth defect as an actual defect. I have always lived in a very small, rural community that is so friendly and accepting. I have never in my life been picked on or treated differently because of my condition. They ask about it, but politely. And I'm always so eager to tell them about it. I feel that the more that they understand, the more that they will accept it. To tell you the truth, I have never believed that I look much different from anyone else. I cannot look at people and see a dramatic difference, and I do believe that my friends and peers who I have went to school with since kindergarden don't exactly see it so much any more as well. They've just gotten used to it. In a way, my cleft lip and pallet helped me, if you can believe it. In fifth grade I decided to join beginning band. When I signed up, they had people there to help you decide what instrument you would play. Well, because the way my lip is shaped, and because I had no front teeth at the time at all, the only instrument I could make a sound on was the flute. And after seven years of band, I'm so happy that that was my choice, I love the flute, and love to be part of the marching and concert band at my school, I've even been able to progress to piccolo which is a smaller verison of a flute. My life practily revolves around band, and I'm so proud to say that I earned my letterman's jacket this past October for my dedication. The only name that people call me at school is "The smart girl." I laugh at it. Basicly, the deal is that I'm in the running for Valedictorian. I'm a junior, and since my freshmen year I have maintianed straight A's-a 4.0 average. I am so proud of that. As for my future, this comming summer will consist of recovering from my next operation which will be plastic surgery on my nose and lip. I'm so excited, but a little nervous. I feel that this will be the first operation that will physicaly change my appearance. But I'm not worried, I have wonderful surgeons. There has even been talk of possibly removing my braces! I almost cannot imagine being without them. I hope that my story has given hope to others and has shown mothers of cleft lip and pallet children that your child can fit it perfectly, you just have to make sure that they know that and that they believe it. I have never been treated differently by anyone, and I think that that's the key to my normality. |
How did you hear about Cleft Advocate? | I found this site while researching scholarships |
Name | SUHAS BHUSKUTE |
Homepage | |
State or Country | india |
Comments | three operations are necessery for cleft pallet or it can be manage in two operations. |
How did you hear about Cleft Advocate? | through internet |
Name | Ann |
Homepage | |
State or Country | mi |
Comments | i'm sorry this computer thin is all new to me we just got ours 4 days ago you'd think a 31 yr old would know a little about them but I don't anyway I just signed on and talked about my son noah but I didn't share that he was born with a complete uni-lateral cleft lip & palate he's had 2 surgeries so far 1 to close up the lip when he was 3mths old the next when he was 8mths old to close up the palate the ortho doc is talking about some dental procedures to begin the beginning of the year we're hoping this doesn't affect his speech to much he is doing so well now our speech therapist say we barely qualify to even be there (isn't that great) |
How did you hear about Cleft Advocate? | surfing |
Name | Ann |
Homepage | |
State or Country | mi |
Comments | i have 3 son's all beautiful and healthy our oldest noah has had a few challenges since his birth in 2001 but with the love of the Lord his parents family & church family he is an amazing smart well spoken little 3 yr old we doctor with Children's Hospital in Detroit they are wonderful to him to us and to our family my husband & I thnk the Lord everyday for him & our other 2 children |
How did you hear about Cleft Advocate? | surfing |
Name | JuanEllen Salter |
Homepage | |
State or Country | OK |
Comments | i do not have a child with cleft issues but i do have a son that has PKU if anyone could give me some help in that area....we r active duty af and will b reporting to Nellis sometime in late July or early Aug of 05...i was just hoping to get some heads up so i can get things rolling now instead of after i get there....thank you.....JuanEllen |
How did you hear about Cleft Advocate? | a friend |
Name | DELIA GONZALES |
Homepage | |
State or Country | COLORADO SPRINGS |
Comments | PEACE EVERYONE IT IS A BLESSING TO SEE SO MANY CONCERENED PEOPLE AND PARENTS IN UNITY AND LOVE FOR THEIR CHILDREN. MY SON JUBAL IS NOW 11 MONTHS AND WAS BORN WITH A CLEFT LIP AND A BILATERAL CLEFT PALATE. HE WILL HAVE HIS PALTATE CLOSE IN JUNE. HE'S A LITTLE CUTIE:) TAKE CARE AND FEEL FREE TO CONTACT ME FOR SUPPORT OR INFORMATION-I COULD USE AS WELL. (719)526-4921 DAY TIME |
How did you hear about Cleft Advocate? | SURF |
Name | Ashley |
Homepage | |
State or Country | Washington |
Comments | HELLO my name is Ashley, I am sixteen years old, and I was also born with a cleft lip / palet. My father was also born with a cleft lip / palet. I just currently had what was planned out to be my last surgery. I had the hole in the roof of my mouth closed up completely. It has seemed to help my speech problem. Over the years I have had around thirteen or fourteen surgerys to help with the deformity I have been born with. You may be thinking that I sound very wealthy by how many plastic surgerys I have had but my family only has enough money to put a roof over my head and fead me warm meals. I appreciate everything they do for me. I live with my grandmother LaVerne. And the state pays for my surgerys, but of course only the ones relating to my cleft lip / palet. The state wasn't going to give a refearl to my plastic surgeon saying that it was paid for, but luckily he insisted on doing it anyways, even though we couldn't pay. My family was so pleased with him. He told me that he is accepting alot of children with this kind of disorder. If you are interested his name is "Dr. Ozockie." He works at "O.H.S.U" a children's hospital in Portland Washington. I appreciate every thing my family has done for me, but I still have problems of my own that they don't understand. For example I still get stared at funny, and asked weird questions, even though all the surgerys I have had. It still hurts ever time that someone is rudly judging by what they see. When I was younger I had alot of problems making friends, because no one would give me a chance. It hurt so bad being rejected when I tried so hard. Even adults would treat me differently. I would come home crying every day because of of rude coments that were made and the way I was treated, all I wanted was to be accepted. At one point in my life I started to accept what I was, because I couldn't change it no matter how hard I tried, and no matter how many tears ran down my face I could never change myself. So I learned to accept that I was born special and I started to not care so much about what others thought, and more about how I did. Today I write poetry, because when I find myself crying and alone with no one to talk to who would understand or even care, I express myself by writing what I feel and how I believe things should be. Some of my poems I have shared with friends and family and it has opened they'er eyes to see things the way I do. My family and friends understand the pains i've felt. I am grateful for my grandmother LaVerne, she adopted me because when I was younger my mother and father were both involved in drugs and wern't able to support my sisters April, and Amber. So the three of us girls were put in foster care. Luckily my grandmother LaVerne had adopted me which made her my legal guardian. I moved in with her when I was six years old, and my father also acctionaly stays there to. I visit my mother about every other weekend. I would love to live with her but I know its not possible because of the visitation rights. My sisters April and Amber live in a foster home and they visit there real grandmother named "Bev." My mother and I havent seen or talked to my sisters in over 11 years. There grandmother has given them a picture of me so they know that they have another sister, but they have said nothing of my mother. About every two years I get updated pictures of them. Its so exciting when I receive them because i'm happy but still sad because I cant see or meet them. I have learned to accept alot of things in life, and I hope that when your approached with new challenges you learn how to accept them so that you can over come them. I appreciate everyones entry's and the ones who have organized this web site. THANK YOU so much. This has helped me and I'm sure it will help many more. - Ashley... |
How did you hear about Cleft Advocate? | "I was surfing for support" |
Name | Joan Russell (Alex's Mom) |
Homepage | |
State or Country | NLV, NV |
Comments | Alex is now 6yrs old. He has the most beautiful smile, super speech and a great attitude. Special Children's in Las Vegas, NV was a god send to our family. Taking one day at a time. |
How did you hear about Cleft Advocate? | Special Children's Las Vegas NV |
Name | John |
Homepage | http://www.window-drapes.net/blinds/ |
State or Country | USA |
Comments | Just passing by. |
How did you hear about Cleft Advocate? | Friend |
Name | PEGGY J SANDERS |
Homepage | |
State or Country | ALABAMA |
Comments | MY GRANDSON WAS BORN 11/27/04 WITH A CLEFT PALLET. HE LIVES IN TENNESSEE AND BASICALLY DOES NOT HAVE INSURANCE. WHAT CAUSES CLEFT PALLET? DO YOU KNOW OF ANY FOUNDATIONS OR GROUPS THAT WILL HELP WITH THE SURGERY TO CORRECT THIS PROBLEM FOR FAMILIES WITH LIMITED INSURANCE AND INCOME? |
How did you hear about Cleft Advocate? | INTERNET |
Name | Mindy Miller |
Homepage | |
State or Country | Georgia |
Comments | I have a son with a UCLP. Born 7/19/2004. |
How did you hear about Cleft Advocate? | friend |
Name | Lauren |
Homepage | |
State or Country | Colorado |
Comments | i am looking for replacement parts (namely nipples/teats) for the haberman feeders at a reasonable price. I am a single mom of a son with bclp. he has already had his lip repaired but wont have his palate done for atleast 4 more months and all of his bottles are wearing out. if anyone can help please let me know!!!! thank you |
How did you hear about Cleft Advocate? | denver childrens hospital |
Name | John |
Homepage | |
State or Country | United States |
Comments | I was born with Cleft Pallet 23 years ago. My family struggle to pay for the surgery for me when i was a child. But later in my early teen a doctor told me about the "Special Childrens Program" that help to pay for my three surgery. I had around 10 surgery before the age of 12. Life was hard for me when i was a child even today. I am looking for scholarship to pay for college. My famliy had spent so much money on me. Can anyone help me? |
How did you hear about Cleft Advocate? | Google Search |
Name | Britny |
Homepage | Hotmail |
State or Country | New Mexico |
Comments | I luv this site |
How did you hear about Cleft Advocate? | a friend |
Name | Gary Peterson |
Homepage | |
State or Country | NC |
Comments | My daughter-in-law just found out that she was going to have a son....with a cleft lip. She had an appendectamy at 5 wks. Could this be the culprit? How many surgeries does it take to fix a cleft lip? Is it still visable in most cases? What about insurance? My son is the most highly trained Paramedic in western NC but has no idea of what to really expect in this case. What might we face in the next 6 months or years pscologically and physically.............Help a destressed Grandfather |
How did you hear about Cleft Advocate? | I found it with Yahoo Search |
Name | SARAH DOLINGER |
Homepage | YAHOO MESSENGER |
State or Country | WV |
Comments | i WAS BORN WITH A CLEFT LIP 54 YEARS AGO. THE NAVY HOSPITAL DID MY SURGERIES BOT WERE VERY INEXPERIENCED FOR THEESE PROCEDURES.iT HAS ALWAYS BEEN MY DREAM TO HAVE A GOOD PLASTIC SURGEON TO MAKE ME FEEL BETTER ABOUT MYSELF.i HAVE WANTED A PRETTY SMILE ALL MY LIFE .i TRY TO NEVER SMILE BECAUSE IT MAKES ME LOOK EVEN WORSE.i GUESS ITS A LITTLE TOO LATE TO HELP ME ESPECIALLY WHEN THE CHILDREN SHOULD COME FIRST.tHE ONLY INSURANCE I HAVE IS MEDI-CADEE -IF THERE IS A SPECIAL DOCTOR OUT THERE WHO WANTS TO MAKE MY DREAM COME TRUE YOU KNOW HOW TO REACH ME. |
How did you hear about Cleft Advocate? | INTERNET |
Name | T D P |
Homepage | |
State or Country | TX |
Comments | My best friend's little boy was born with a severe cleft palate and lip. It is hard to see soemtimes but he's doing well. I think it's great that there are web sites such as this one to offer a little "i know where you're coming from " feeling. I just wanted to give my appreciation. |
How did you hear about Cleft Advocate? | surfing |
Name | Joey Johnson |
Homepage | |
State or Country | TN |
Comments | I am glad to see such a website as this to be a source of encouragement for those families dealing with children with cleft lip and pallets. I was born with a bi-lateral cleft lip and pallet. I wish my mother could have benefited from a support network as she was faced thirty-six years ago with a healthy, yet not quite "perfect" baby boy. I hope to be able to offer support and encouragement based on my experiences. |
How did you hear about Cleft Advocate? | surfing the net |
Name | Samantha Lalonde |
Homepage | |
State or Country | Canada |
Comments | Hello, I am doing a grade 10 science project on the deformity "complete bilateral" If you have any information on how this occurs in the womb, preventative actions, support groups, or what it is like to live with a double-cleft palate, please contact me at the email adress listed above. Thank-you very much-Samantha Lalonde |
How did you hear about Cleft Advocate? | Google alllll the way! |
Name | faith oden |
Homepage | yahoo |
State or Country | alabama |
Comments | my husband and are a low income family.I took my 9-year old to an orthodontist.At the recommendation of his pediatric dentist.My son has medicaid that pays for pediatric dentistry.But not for orthodontist.The orthodontist daid that if my son teeth are pushing out and up.and could possibly interfere with his breathing.could you please help.I need $395.00 as a down payment.and then $100.00 amomth for 5 months.Yhankyou Faith Oden. |
How did you hear about Cleft Advocate? | search |
Name | Linda Van Der Pool |
Homepage | www.pacareerlink.state.pa.us |
State or Country | Pennsylvania |
Comments | I just met Billy Wolfe, who was appearing at the 2004 Career Fair here in Lewisburg this past Wednesday afternoon. Not only was he a delight to talk with, but his talk about those who are seeking employment really drew alot of attention of those that attended this annual event. Those with the handicap of having a cleft lip or palete, have a great speaker as well advocate in Billy. Linda Van Der Pool Site Administrator/Supervisor PA CAREERLINK Lewisburg, Pennsylvania |
How did you hear about Cleft Advocate? | Billy Wolfe |
Name | Karen Gamez |
Homepage | |
State or Country | Florida/ Nicaragua |
Comments | I was born with cleft pallet as well as cleft lip twenty-six years ago. It been hard to deal with being different to others, but not my family and true friends they never treaded me different from my brother and sister, and i thank tem for that. The hardest thing to deal has been the health insurance companies. To this day i still have about two or three surgeries left to be done with everything that makes me different than other physically, but i am thankfull for my family and friends. |
How did you hear about Cleft Advocate? | I came across it seaching for information |
Name | Misty |
Homepage | none |
State or Country | KANSAS |
Comments | Hi my name is Misty. My youngest child Jerry was born with cleft lip and pallet,which came as a shock to me because I had 3 healthy boys and no problems with any of the other boys. I was doing a search on yahoo and seen this sight. I have enjoyed reading the stories about other parents and kids like us. We went to a ps in Wichita and I wanted a 2nd oppion (I didnt like the way he presented himself) The same week my aunt heard about the Shriners having a clinic to send kids to thier hospitals for help. I had never been on an airplane until they sent us to the Burns Shrine Hosp in Galviston,Tx. They did a wonderful job. you cant tell he ever had any thing wrong. Dr. Blackwell is wonderful with the kids and he cares about what he does. I just thought I would share with you. If any one would like to e-mail me feel free. |
How did you hear about Cleft Advocate? | search engine |
Name | Rickey Smith |
Homepage | |
State or Country | Arkansas |
Comments | My daughter is doing research in this area.Wanted to re-familiarize myself. |
How did you hear about Cleft Advocate? | web search |
Name | Kristy Hodge |
Homepage | |
State or Country | Little Rock, Arkansas |
Comments | This site is awesome!! The FTFC is great! Thanks, Debbie!! My son was born with a unilateral cleft lip and palate on Aug. 4, 2003. This site has been a God-send!! |
How did you hear about Cleft Advocate? | I just found it, thank goodness!! |
Name | Carl Schraefel |
Homepage | |
State or Country | Canada |
Comments | Hi, Interesting website! I am a 45 yr old guy with a cleft lip and palate. I must say that it did affect my teenage years the most. As seems that is the time of life 'we' are most critical of our appearance. I managed to survive, thanks to great support of family and friends. Ironically, I am now in the teaching profession and currently teaching English in Saudi Arabia. I have taught both English and Art in Africa, United Arab Emirates and now Saudi Arabia. I think the most important factor in maintaining a healthy approach to life is getting over one's self and focus on helping others ~in what ever form that may take. I am considering having some cosmetic surgery to make my appearance 'nicer' as I age the scar on my lip is caving in ~yikes!~ still searching for a good surgeon in Ontario, Canada. Anyone know any good surgeon they can refer? Thanks. |
How did you hear about Cleft Advocate? | Internet search |
Name | Billy Wolfe |
Homepage | |
State or Country | Pennsylvania USA |
Comments | To Debbie Oliver and Rickie Anderson Gill and the many others, who are apart of this whole great network. You're the greatest group of folks, that I've ever been so very proud to call my friends and buddies! You make me so proud. to tell everyone that I meet during my many travels across this country of ours about AboutFaceUSA and The Cleft Advocate programs! GOD BLESS EVERYONE APART OF THESE TWO TEAMS, AND I MEAN THAT REALLY FROM MY HEART TO ALL OF YOURS! Love & well wishes, Billy Wolfe Personal Manager GLADYS HORTON Founder & Original Vocalist THE MARVELETTES Motown Records Recording Artists 1960-1970 P.S. You all make me so proud to be an American,and to show the world that we really do care about our children all over the world! |
How did you hear about Cleft Advocate? | Rickie Gill & Debbie Oliver |
Name | "Billy" |
Homepage | |
State or Country | Pennsylvania |
Comments | There are many moments, when a parent of a child with a cleft lip or palet think "why me" or "why my child"? I am one of those who was born with a cleft palet, and during my school days I was always made fun of and hurt my remarks that were never very nice! But with all of the pain, and through all of the many tears that I cried...I became that much more smarter and respected by the many others who felt my pain and seen my hurt and shared my many moments of being proud of who I was inside. This message to the many parents of a child, who has either a cleft lip or cleft palet. Be supportive of your child, love them with your heart but don't smother them with your love! You can be understanding, but it's so much better not to suffocate and hurt them in the process. We need to be understood, not to be used as someone else's joke and make us cry in the process. We have feelings just like anyone else, but when we're young our peers in the classroom never think before they use us as their own private joke by saying things that only cause us to cry and be hurt! As I've became older, I have also become alot wiser in that I can see not ever one is out there in society to make us cry...some also feel they need to feel sorry for us! But we don't want that, all we want is a chance to prove that we can be like everyone else with feelings that we have deep within as well alot of pride in all that we do in life! Thank you for reading this, and I hope that somewhere I've made someone smile who can truly understand where I am coming from and where I hope this will travel? GOD BLESS THE MANY PARENTS, WE DO LOVE YOU ALL SO VERY MUCH! |
How did you hear about Cleft Advocate? | Rickie "The Great" Anderson Gill |
Name | mary achenbach |
Homepage | |
State or Country | IOWA - USA |
Comments | MY SON WAS BORN WITH A UNILATERAL CLEFT LIP AND PALATE IN 2000. HE VISITS THE CLEFT TEAM AT THE UNIVERSITY OF IOWA IN IOWA CITY, IOWA. I WOULD NOT HAVE SURVIVED THROUGH THE PAST 3 YEARS WITH OUT DR. JOHN CANADY AND HIS NURSE DEB. THEY ARE THE WORLD TO ME AND MY SON STEPHEN. HIS CLEFT HAS BEEN A CHALLENGE FOR HIM CAUSING MAJOR SPEECH PROBLEMS THAT HAS SET HIM BACK A LITTLE IN LIFE. STEPHEN IS SET TO HAVE HIS THIRD CLEFT SURGERY THIS OCTOBER OF 2004,WITH MANY MORE TO COME. THE SUPPORT IS OUT THERE IF YOU WANT IT. YOU JUST NEED TO ASK,AND EVERYONE WILL HELP. |
How did you hear about Cleft Advocate? | internet |
Name | Emma Royston |
Homepage | |
State or Country | UK |
Comments | I've been on this website for over a year now, but have only just found this guestbook! Ho hum... All you guys have really helped me through my tough times, and I'm very grateful. Thanks! |
How did you hear about Cleft Advocate? | From my friend |
Name | Jon |
Homepage | |
State or Country | Kentucky |
Comments | Hello, I am a 19 year old college student. I was born with cleft lip and palet and maintain a lovely set of scars under my nose to this very day :). This group, I can tell, is a wonderful place for parents and patients like myself. The first time I ever met another cleft patient was accompanied by a great feeling of triumph. Why so triumphant? Because we live in a society in which everyone likes to think they're the leading roles in a TV show. No one's immune to that feeling, and for as long you can you keep trying to climb that ratings ladder, climbing, climbing, until one day, POW! Something happens again to remind you that No, you're not in the leading role, you've been pegged for comic relief from the start because they didn't know where else to put you. And it's only then that you realize life was never meant to be a dumb TV show, and you toss all that scripted self-pity out the window. That's the triumph. I know I've never met a cleft patient who was fond of self pity or wanted anyone else's. However, encouragement is another matter. Kudos to Cleft Advocate. If anyone would like to correspond, please feel free. |
How did you hear about Cleft Advocate? |
Name | Gladys Horton |
Homepage | |
State or Country | Los Angeles, CA |
Comments | My personal manager, Billy Wolfe, was born with a cleft palet and I thank god that I found him when I did. I've had other managers before him, but Billy is very special because he cares not about himself but about others who are in need. I am glad to be his client, and even more special is the fact that he's always there for those who need him to fight for them. I salute those who have a child, who were born with any birth defect. I know because my youngest son Sammy, was born with a birth defect. And a mother's love for a special child, is the strongest that anyone can from within! GOD BLESS THE CLEFT ADVOCATE, AND BILLY WOLFE...FOR MAKING TOMORROWS ALOT BRIGHTER FOR MANY FAMILIES. Gladys Horton Founder & Original Vocalist THE MARVELETTES Motown Records Artists 1960-1970 2004 Vocal Group Hall of Fame Inducee 1995 R&R Hall of Fame Nominee |
How did you hear about Cleft Advocate? | Billy Wolfe |
Name | Sandra Garibay |
Homepage | |
State or Country | Texas |
Comments | Hi my name is Sandra, I'm 20 years old and was born with cleft lip and a notched gum. Luckly my palet was intacked. i had my first sugury when I was 4 months old. I've had my plastic sugurys espcailly a painful bone graph. I just recenty had a rinoplasty,septoplasty to try to correct the apperance of my nose it was a improvement but you can still tell. Being clept lip is so difficult because it is so noticable and many don't understand.The hardest thing for me is that I was blessed with attractive feature except my nose. The only improvement was my lip it mnot that noticable i had an exclent plastic surgon. |
How did you hear about Cleft Advocate? | resarch |
Name | Staci Przybylski |
Homepage | |
State or Country | Iowa USA |
Comments | I have two email addresses and wanted to make sure you receive both. I have sent my story and pictures and hope to send more pictures as I get them. Thank you so much for this site! |
How did you hear about Cleft Advocate? | other cleft sites |
Name | Staci Przybylski |
Homepage | |
State or Country | Iowa USA |
Comments | I'm trying to gather all the information I can on cleft lips and palets being as my grandaughter was born with both. |
How did you hear about Cleft Advocate? | From visiting other web sites relating to this. |
Name | Nicole |
Homepage | |
State or Country | australia |
Comments | hey i just read your site and it is so helpful and makes me feel alot better of myself i was born with a cleft apllet and gone through quite a few surgeries and goin for another for my jaw in two weeks. i can get emotional alot because of those immature ones who laugh and tease about you but i went through and think ive gotten through ive got my family and friends to keep me going making me happy!! thank you |
How did you hear about Cleft Advocate? | surfing |
Name | VWR |
Homepage | |
State or Country | Ca. |
Comments | I would like to hear from a parent of a teenager or even a middle school age child who's child had a cleft palate repair and how is their speech? I have a four year old daughter, who we understand but for others its hard to understand her. I worry about her not being understood as she gets older. thank you |
How did you hear about Cleft Advocate? | yahoo search engine |
Name | Lauren |
Homepage | |
State or Country | colorado |
Comments | i recently gave birth to a beautiful baby boy who has a bi-lateral cleft lip and palate. it is very frustrating and stressful, especially come feeding time. i was planning on breast feeding but now i am forced to pump breastmilk and feed him with a haberman feeder. as tiring as it is, it is worth every minute that i get to spend time with my son since i am a single parent. to anyone going through the same thing, just keep with it and everything will be ok in the end. |
How did you hear about Cleft Advocate? | searching for cleft sites |
Name | Lynn Huisken |
Homepage | |
State or Country | Philippines |
Comments | Dear Sirs My wife and I just had a baby, she has cleft lip and cleft palate, I was wondering if you could help me with a few questions the baby is 2 weeks old and I have attached a picture of her for you to look at. My questions are do you have a cleft palate team of surgens that do this procedure and approximately when and how much the operation cost? Also any other information you could send me would be appreciated, I live in the Philippines but I work overseas I live in Puerto Galera Mindoro so my wife would have to bring the baby in , so if you could let me know what can be done we can arrange for the trip, Please bear in mind that we will have to travel a long way to get there when making appointments. Thank you |
How did you hear about Cleft Advocate? | internet |
Name | teressa williams |
Homepage | |
State or Country | ky |
Comments | i was going threw the web site going into groups my maden name is puckett before i married; thanks |
How did you hear about Cleft Advocate? | web site |
Name | Debbie Oliver |
Homepage | http://www.cleftadvocate.org |
State or Country | Nevada |
Comments | Ashley, thank you for your questbook entry. Please join us at cleftAdvocate's Family-to-Family Connection at http://www.cleftadvocate.org/ftfc.html. You can get a freebie e-mail account at hotmail or yahoo to participate, or you can correspond with us right on the internet through your Family-to-Family account. I would also love to hear from you personally about being a Featured Family (http://www.cleftadvocate.org/indexfeaturedfamilies.html). Let's get in touch! Debbie Oliver, Director, cleftAdvocate |
How did you hear about Cleft Advocate? | I am the program director and webmaster! |
Name | Ashley |
dont have 1 curently | |
Homepage | |
State or Country | U.S.A |
Comments | HELLO my name is Ashley, I am sixteen years old, and I was also born with a cleft lip / palet. I just currently had what was planned out to be my last surgery. I had the hole in the roof of my mouth closed up completely. It has seemed to help my speech problem. Over the years I have had around fourteen or fithteen surgerys to help with the deformity I have been born with. You may be thinking that I sound very wealthy by how many plastic surgerys I have had but my family only has enough money to put a roof over my head and fed me warm meals. I appreciate everything they do for me. I live with my grandmother LaVerne. And the state pays for my surgerys, but of course only the ones relating to my cleft lip / palet. The state wasn't going to give a refearl to my plastic surgeon saying that it was paid for, but luckily he insisted on doing it anyway, even though we couldn't pay. My family was so pleased with him. He told me that he is accepting allot of children with this kind of disorder. If you are interested his name is "Dr. Ozockie." He works at "O.H.S.U" a children's hospital in Portland Washington. I appreciate every thing my family has done for me, but I still have problems of my own that they don't understand. For example I still get stared at funny, and asked weird questions, even though all the surgerys I have had. It still hurts ever time that someone is rudly judging by what they see. When I was younger I had allot of problems making friends, because no one would give me a chance. It hurt so bad being rejected when I tried to make friends. Even adults would treat me differently. I would come home crying every day because of how rude I was treated, all I wanted was to be accepted. At one point in my life I started to accept what I was, because I couldn't change it no matter how hard I tried, and no matter how many tears ran down my face I could never change myself. So I learned to accept what I was and I started to not care so much about what others thought, and more about what I did. Today I write poetry, because when I find myself crying and alone with no one to talk to who would understand or even care, I express myself by writing what I feel and believe things should be. Some of my poems that I have shared have touched a part of there heart that has caused them to cry. Maybe because they understand, or feel the pain I have, and maybe experienced it themselves. I am grateful for grandmother LaVerne, she adopted me because at the time, when I was younger my mother and my mother were both involved in drugs and wernt able to support my sisters April, Amber and I. So us three girls were put in foster care. Luckily my grandmother LaVerne had adopted me which made her my legal guardian. I moved in with her when I was six years old, and my father also acctionaly stays there to. I visit my mother about every other weekend. I would love to live with her but I know its not possible because of the visitation rights. My sisters April and Amber live in a foster home and they visit there real grandmother named "Bev." My mother and I havent seen or talked to my sisters in over 11 years. There grandmother has given them a picture of me so they know that they have another sister, but they have said nothing of my mother. About every two years I get updated pictures of them. Its so exciting when I receive them because i'm happy but still sad because I cant see them. I have learned to accept allot of things in life, and I hope that when your approached with new challenges you learn how to accept them so that you can over come them. I appreciate everyones entry's and the ones who have organized this web site. THANK YOU so much. This has helped me and I'm sure it will help many more. - Ashley... |
How did you hear about Cleft Advocate? | "I was surfing for support" |
Name | Terri |
Homepage | |
State or Country | WI |
Comments | I am greatful for your site!! My first grandson was born with a cleft lip and palate. My daughter was 18 when he was born, scared to death that she or the father did something wrong. This sight is great for all, people experiencing the tragedy and who want to know more. I will be writing on this for my next assignment for my writing course, this site will help me out with that. It is a writing course on writing for children. Thank you again! Terri |
How did you hear about Cleft Advocate? | surfing |
Name | Stacy |
Homepage | |
State or Country | NY |
Comments | I'm 14 years old, and i was born with cleft lip and pallet. It's not the worst thing to happen,but people can act pretty immature about it and hurt you emotionally. Not only have I been physically scared, but also emotionally. It's been real tough throughout middle school, but now that I'm about to enter high school in September, it's going to be really tough. I'm self contious about myself big time. I feel like that's all the people look at, and that boys don't want to go out wit me because of that small scar above my lip. So far I've gone under 8 surgeries trying to "perfect" me. Yeah the doctors did an awsome job at it, and im sooo thankful that they've fixed it as much possible, but at times i can feel real bad about myself,and i always seem to be asking god, "why me?" I know i should be greatful for living in this great country that supply people with the greatest surgeons,and that i was able to be worked on by the greatest surgeons, it's just that...kids my age are real cruel. When i turn 15, or maybe in october, i can "sand down" the scar as one of my doctors had said, and to make my nostrols a more even. You can't really tell my nostrols are uneven unless u look under my nose. My whole reason for writting this is to ask for your help. If anyone knows a really great doctor that can help me please email me at my parent's adress: FRANCY8690@optonline.net thank you for your time. --Stacy |
How did you hear about Cleft Advocate? | looked it up on google. |
Name | Angela Bonham |
Homepage | |
State or Country | Colorado |
Comments | I am 22 years old with an almost 10 month old son who was born with a bilateral cleft lip and palet. He was born 3 weeks early and was 8 lbs 11 oz. He is a very healthy boy. I have 3 other children who all were born healthy. When Miles was born with this birth defect, I was shocked and scared. We live a very small community where they don't ever see this. He was flown to Denver to Children's Hospital and spent the first 8 days of his life learning how to eat with a Haberman Feeder and opturator (fake mouth peice). He had one surgury on New Years to close his lip and another the end of April to close his palet and work on his lip. He is so handsome. He is starting to walk and talk and he just amazes me every day. I just want to say thank you for having a website for parents like me. I sometimes still wonder "why me" when he is having a bad day (allergies, ear infections ect. caused by his palet), and it helps to tell my story and read others. Again, thank you very much. If anyone is intrested in talking to me, please email me. |
How did you hear about Cleft Advocate? | surfing |
Name | Asaba Owerri |
Homepage | |
State or Country | lagos |
Comments | I love this page. It looks really nice and cool. Keep up the good work. |
How did you hear about Cleft Advocate? | from a friend |
Name | Maria Theresa Ygaña |
Homepage | |
State or Country | Philippines |
Comments | very informative and helpfull |
How did you hear about Cleft Advocate? | cleftkids/cleftchat |
Name | jullie cannon |
louloukathey2 | |
Homepage | |
State or Country | usa |
Comments | i liked ure pagr |
How did you hear about Cleft Advocate? | i have cleft advocate |
Name | magamugu |
Homepage | |
State or Country | togo |
Comments | A very nice site |
How did you hear about Cleft Advocate? | A word of mouth |
Name | Rachel |
Homepage | |
State or Country | California |
Comments | My 6 month old grandson had his first surgery last Friday to begin repair of his cleft lip and nose. In six months the doctor will begin work on the palete, which I understand is a much more serious surgery. Tomorrow will be my grandson's 5th day in the hospital due to breathing complications. He was transferred from one hospital to another hospital with a Pediatric ICU. The baby cries for hours, his breathing is still not stable and he is off and on the oxygen machine. Has anyone else experienced similar symptoms? Is this more serious than we are told and is there anything or anywhere I can go to find more information. Both hospitals have done extensive testing and they do not have any idea why the baby breathing will not stablize. The testing did show that his heart is positioned in the middle of his chest and appears to be functioning normal. It's difficult for me to really know how he is doing because the hospital is an hour away and they will not tell me anything over the phone. My young daughter-in-law is alone most of the time in the baby's room caring for the baby herself. Today the baby cried for 4 hours straight. The nurses did not seem to respond and told her the crying could strengthen his lungs. I don't know what to think. Any advise will be appreciated. Thank you |
How did you hear about Cleft Advocate? | surfing |
Name | Gerald Degerstedt |
Homepage | |
State or Country | Wisconsin/USA |
Comments | Thank you Deborah for the very wonderful site that you have put together for all of the people who have cleft lips and palates |
How did you hear about Cleft Advocate? | Member |
Name | Nicole |
www.Nicoleehms@n et | |
Homepage | |
State or Country | Maryland |
Comments | My daughter was born with a cleft lip on 2/28/04 at Johns Hopkins. I Did not know that she was going to be born with this. I have 2 sons and was wishing and hoping for a daughter. I can say I was stocked to hear that she had a cleft. At first i was hurt and mad that this had to happen to me. I did everything right. I got over it and still happy that I had my daughter. She had she first surgery on May 20, 2004 at John Hopkins at 9:00. It took 1hour and 45min. I cry because my baby look so differt and good. She look like a new baby. She need 2 more surgery. but iI know that it will be o.k. |
How did you hear about Cleft Advocate? | cleft lip paper |
Name | Ta'Lia Hawkins |
Homepage | MSN |
State or Country | Baltimore, Maryland |
Comments | Wish you all the luck. |
How did you hear about Cleft Advocate? | My Child have a cleft lip |
Name | Melissa and Austin |
Homepage | |
State or Country | KY |
Comments | MY SON IS 10 YEARS OLD NOW AND I ONLY FOUND THIS WEB SITE JUST 2 DAYS AGO I WISH I WOULD HAVE HAD THIS RESOURCE BACK WHEN HE WAS BORN AFTER HIS BIRTH HIS FATHER AND HIS SIDE OF THE FAMILY DIDNT WANT ANYTHING TO DO WITH MY SON AND I REALLY FELT ALL ALONE AND SO SORRY FOR MY BEAUTIFUL SON HE WAS BORN WITH BILATERAL CLEFT LIP AND CLEFT PALATE HE WAS SO GOURGOUS TO ME WELL ANYWAYS THIS WEB SITE AND THE PEOPLE HERE ARE SO WONDERFUL I JUST WISH I KNEW ABOUT IT BACK THEN TO HELP ME THROUGH THE HARD TIMES THANKS AGAIN FOR BEING HERE AND HELPING MOTHERS LIKE MYSELF BY THE WAY I AM MARRIED NOW TO AUSTINS STEP FATHER AND HE IS SO WONDERFUL TO HIM GOD REALLY WATCHES OVER US IN OUR HOURS OF NEED GOD BLESS YOU ALL |
How did you hear about Cleft Advocate? | internet |
Name | TED RIOT |
Homepage | tedriot.com |
State or Country | mi |
Comments | My name is TED RIOT and I was born with a cleft lip and a cleft palate. Now I do National Comedy, and charity events for The Cleft Palatte Clinic of Mi. If you need or want any help or advice, E mail me TEDRIOT@HOTMAIL.COM or goto TEDRIOT.COM |
How did you hear about Cleft Advocate? | dmc |
Name | Melissa |
Homepage | |
State or Country | Florida |
Comments | I am 19 years old and 34 weeks pregnant with my first child. I was recently told my son may be born with a cleft pallet. any advice or information is greatly apprieciated. I could also use someone to talk to who has been through this situation. |
How did you hear about Cleft Advocate? | My mother in law |
Name | TAMMY |
Homepage | |
State or Country | TENNESSEE |
Comments | HI |
How did you hear about Cleft Advocate? | INTERNET |
Name | Kay |
Homepage | |
State or Country | NY |
Comments | Hi I have a new Grandson born with a cleft lip and cleft palate. My daughter is pumping so that her baby can have her breast milk but between feeding, pumping and caring does not have time for other things. Is there anyway to help prevent excessive gas besides watching what my daughter eats? |
How did you hear about Cleft Advocate? | family member |
Name | Karen |
Homepage | |
State or Country | Indiana |
Comments | I am a 46 year old woman, born with a cleft palate, (on one side). I think the pain of this deformity made me the Social Worker I am today! I have been to see a plastic surgeon about the scar and my malformed nose and lip, of course I was told it was cosmetic. After reading your information, I really want to try again! Your site gives me hope on a very personal issue, thanks so much!! |
How did you hear about Cleft Advocate? | Internet |
Name | melissa |
Homepage | |
State or Country | florida |
Comments | i am 24years old and i was born with a cleft pallet and lip w/ nose deformity. i have had 6 surgeries before i was 10. i think i look pretty good, but my bone graft did not hold when i was younger so i am forced to wear a retainer with 2 fake teeth. i am thinking about going in for more surgeries but i have to say i'm scared. |
How did you hear about Cleft Advocate? | surfing |
Name | Michelle Kurns |
Homepage | |
State or Country | OR |
Comments | My son was born April 2003 with a unilateral cleft lip and a bilateral cleft palate. It has been a help to see other families who go through this too. We are trying to get a support network going now in the area. |
How did you hear about Cleft Advocate? | Friend |
Name | Juan Sandoval |
Homepage | |
State or Country | Los Angeles Ca. usa |
Comments | Great site informative for those parents that have children with this problem |
How did you hear about Cleft Advocate? | sufing the internet |
Name | shannon |
Homepage | |
State or Country | ca. |
Comments | My name is Shannon and I have a very handsome son named Adrian he was born with a cleft lip/palate and a nose deformity also. Adrian was born on September 16,1999 he is 4 1/2 years old and I am very proud to be his mother. Adrian also has gastro. problems, ashma and we were just told that he is boader line for cystic fybrosis we are not really sure what that means but we are hopeful for are son Adrian will be retested in 3 mon. It is really nice to here what others have to say. Soon Adrian will have a web page of his own also if any one is intrested I have a nephew with HLHS and he has a web cite called Camrens heart. If any one would like to know more about Adrian just email me and I will be more then happy to tell you about my familys journy. |
How did you hear about Cleft Advocate? | surfing |
Name | Alicia |
Homepage | |
State or Country | Ohio |
Comments | Hi my name is alicia i had my fist child at 19 we met with childrens hospital cleft palet clinic when he was 5 days old he had a double cleft palet and lip he is so great he is very smart he is 11 months old and he talks and everything but he has only 4 teeth i am worryed because of this if anyone knows why my son is nit getting teeth pleae email me thanks alicia |
How did you hear about Cleft Advocate? | hospital |
Name | Suzanne Larkowski |
jucogjct@hotmail.com | |
Homepage | |
State or Country | Colorado |
Comments | My son is 17 and has a bilateral cleft lip and palate. He should be having a surgery this summer to repair his lip and nose. He says he won't have it, yet he think's he's ugly. Any advise would be good. Also any advise on how to get Blue Cross Blue shield to cover his ortho work would be great. Colo. laws say he should be covered, but BCBS says they don't have to follow state laws. |
How did you hear about Cleft Advocate? | search |
Name | Terri |
wtjester@yahoo.com | |
Homepage | |
State or Country | WA |
Comments | My son was born 2/18/04 with Cleft lip & palate. This is my first child so it was a shock to hear he had a birth defect but when I was finally told what the defect was - I wasn't worried. Medicine has come a long way over the years and since my beautiful boy was born, we've actually met a lot of people who have had children born with this or know people who have children who had it and they all say you can hardly even tell after it's all said and done. We had my son at Children's Hospital when he was 5 days old and they had us start taping his lip. 2 weeks later we were in having his mouth molded for a temporary palate. He's been wearing it ever since and he's doing great. Definately helps with the feedings (take less time). He goes in for his first surgery in June. Some people just stare at him when we're out but you know, that's just people's lack of knowledge. If they ask, we educate them a bit. We are definately not going to hide him away until his surgeries. We're proud of our sweet little boy and what he's brought to our life. Glad there's a website to be able to do research and get more info on the subject. |
How did you hear about Cleft Advocate? | Children's Hospital |
Name | susan hughey |
susan_hughey@yahoo.com | |
Homepage | none |
State or Country | mt.vernon IL. |
Comments | IM 19 years old and a first time mother. my child has a cleft palet. Shes 4 months old 14 pounds and very heathy.I had no problems when i was peragent. so it was a big shock to find out there was something wrong with my baby.She was only in the hospital for a week and a hafe.Shes a big eater.LOL.it was hard at first but i know now that shes fine and that god wouldent put and thing in me and my husbands life if we couldent handle it.God has really been with us.I would like to hear from some of the teens with a cleft palet. please wright me. |
How did you hear about Cleft Advocate? | friend |
Name | susan hughey |
susan_hughey@yahoo.com | |
Homepage | none |
State or Country | mt.vernon IL. |
Comments | none |
How did you hear about Cleft Advocate? | friend |
Name | Billy Wolfe |
paulwwolfe | |
Homepage | |
State or Country | Carbondale, PA USA |
Comments | I would like to say to all of the parents, that any child with a cleft lip or palet has a good future. I was born with a cleft palet, had nine operations before I was even 15 years old. I have met with five Presidents of the United States, at the White House and have had the pleasure to be friends with entertainers, sports personalities, as well members of politics and I will turn 55 years old on April 15th, 2004. The world has changed since I was a teenager, and the medical field has even changed more than that in the blink of an eye. The future is alot brighter, because of people at The Cleft Advocate-The Cleft Palet Association and AboutFaceUSA. And if you ever have someone who has trouble in the workplace, drop me afew lines at my email address and I will be there to fight for your rights with spirit as well friendship! Those who made fun of me during my early years of school, are now asking me to help them these days with problems that they are in need to be resolved! Times have changed, but that does not mean that you and your loved one must be made fun of in either the workplace or in school. GOD BLESS YOU CLEFT ADVOCATE, I waited for you when I was alot younger...Better late than never I always say! Love to you all, Billy Wolfe |
How did you hear about Cleft Advocate? | Rickie Anderson of AboutFace USA |
Name | muguman |
daviconteh@hotmail.com | |
Homepage | |
State or Country | togo |
Comments | i love this site because it is educative |
How did you hear about Cleft Advocate? | internet |
Name | christine |
pavwoski2000@yahoo.com | |
Homepage | |
State or Country | tennessee |
Comments | my little girl was born with a cleft lipe and pallet she has had many sergurys and has a lot more to go i was 17 when i had her and it still scares me she is 43 pounds at 9 years old she did not gain wait like all the other children i have had due to the problems with her mouth the doctors that she has a great they try to stay on top of things to make sure she is well but i guess you never get over the felling of your child having to deal with there life the way it is and you dont stop thinking it was your fault that poor baby is like that to all the parents out there have hope your child will be ok mine is and she is happy to just keeping pushing people to get stuff done if you have to there is so much that can be done to fix the children thank you a young mom |
How did you hear about Cleft Advocate? | internet |
Name | Jackie |
hanejacalyn@aol.com | |
Homepage | |
State or Country | Illinois |
Comments | I would like to Thank Debbie for connecting me with Cleft Advocate. As an adult I have self-esteam problems. In reading the guestbook I have found out I am not alone. With feedback and reading your stories it has seem to help me already. Debbie, Thank you Thank you Thank you |
How did you hear about Cleft Advocate? | Debbie |
Name | Joanne Blanco-Gober |
Joanna1265@juno.com | |
Homepage | |
State or Country | Massachusetts |
Comments | I just came across this site. I am 38 and was born with a cleft lip and palate. I had a very difficult life and still sometimes feel very ugly. But after finding a wonderful person who loves me for me and having three beautiful kids I feel more confident in myself and am not afraid or shy about my condition. As an adult,I had surgery,not knowing that my insurance would pay for it. My nose is not aligned with my lip and jaw and I was wondering if insurance would pay for more surgeries. My last doctor no longer works for Fallon Clinic. Does anyone who is low income know of someone who could help in this matter. Thank you |
How did you hear about Cleft Advocate? | internet |
Name | Anthony &Liz Covello |
LzCovello@aol.com | |
Homepage | |
State or Country | CA |
Comments | We were shocked when our third son was born with a cleft lip and palet. He is five months old now and has had one surgery. He is scheduled for another in May. Wow what a life changing experience. He is healthy and beautiful.we feel so blessed and would love to hear from those that have experinced the same. |
How did you hear about Cleft Advocate? | searching for info |
Name | Kristy |
garrisonmx@aol.com | |
Homepage | |
State or Country | Michigan |
Comments | I have a daughter that is going on 4 years old now. She was born with unilateral cleft lip and pallet. Like most, I didn't know she was going to be that way until she was born. Considering I had several health issues while carrying her, the last thing that crossed my mind was that she would have anything wrong with her. I can say I was shocked to see her in those first moments, but NEVER thought to shed a tear out of fear or pitty of what would be for her. My husband and I had tried so hard to conceive her and bring her into this world that nothing else mattered. I also believe that the good Lord will never deal you a situation that you can not handle! Being it was summer when she was born and I have an older son that participates in outdoor sports most of the year, I took her everywhere, for the whole world to see. I have spoke to other parents that said they couldn't take their child out until after surgeries, afraid of the stares and possible ridicule, that never crossed my mind. I was just happy to have her here. For those kids that "wondered", I was glad to let them see her up close and ask questions, it only further educates those that know little or nothing of the condition. My son's classmates and fellow motocross buddies have always accepted her no matter what. After all she has and will always remain their "little buddy". The worst was to see an adult point, stare, and whisper, they should know better! My dauther went through one surgery at 4 1/2 months, came through like a champ! The second was at 14 months, she did so well then, the nurses were glad to see her go. She was so full of energy...refused to stay put in bed:) Very hard to keep a toddler in bed! Even harder to chase after them hooked up to iv's. Not to mention she had a huge hunger when she got up and the feedings afterwords are a bit slow:) Those that didn't know her then, can not tell now. They often are shocked to come into our home and see her baby pictures on the wall pre-surgery. She is beautiful! I can honestly say, that when we are out, she always gets comments about how pretty she is. Yes, I have wondered is it because they stare and feel as though they have been caught?? So, on ocassion I have been known to inquire with those that make comments (once I get to know them a bit). I have asked could they tell? Doesn't she appear a little "off". An amazingly enough, few notice. Some have said they see a slight scar above the lip and figured she must have taken a bad spill at a younger age. All I can say for those parent(s) that are afraid for the child's acceptance, don't be. A child recovers quickly and as long as they have strong parent(s) in their life, there really is nothing you as a family can't endure. |
How did you hear about Cleft Advocate? | surfing the web |
Name | Susan Stephenson |
suestephenson2001@yahoo.com | |
Homepage | |
State or Country | wisconsin |
Comments | I too was born with cleft lip and palet. I had sergery at burth and I have learned to live my life normall. It is the Lord who was on my side. |
How did you hear about Cleft Advocate? | serfing the net |
Name | Dave Hodnett |
dhodnett@mindspring.com | |
Homepage | |
State or Country | Va. |
Comments | I enjoyed the article and pics. |
How did you hear about Cleft Advocate? | by the Dale's |
Name | Steve |
abeeline2me@yahoo.com.au | |
Homepage | |
State or Country | Queensland, AUSTRALIA |
Comments | G'Day All, "Thanks" to the creators of this website!! Congratulations! And "Thanks" to the guests that 'drop a line' to help us better understand the myths and truths of being born or know someone with a cleft palet and other related birth defects. I'm a 34 year old man born with a cleft palet (1969). Thankfully you wouldnt know it, with surgery. But sometimes think, if one is born with a cleft palet, has in any way, still affected(ing?) them from childhood to adulthood? Eventhough surgery rectified the palet etc.. while a few years old to later years. I was hoping someone can help me understand about cleft palets from causes (ie, before and / or during pregnancy with mothers smoking etc..; any particular drugs or chemicals used in the 1960's - 70's known now to cause cleft palets in humans?); understanding how it happens and / or why it happens; timing of commencement as a foetus? (ie, cell division etc..; pictures of varying cases; surgical procedures used to rectify the birth defect; any emotional / behaviourial traits people may show during childhood to adulthood due to having been born with a cleft palet?; any evidence of physciological / mental disorders?; speech imparements...; etc.. Thanks to anyone who can help me with any of my questions. All the best :) |
How did you hear about Cleft Advocate? | surfing the net |
Name | Steve |
swidman@megsinet.net | |
Homepage | |
State or Country | illnois |
Comments | We were foster parents for our adopted daughter Brenda. We got her at 18 months, and she is now almost 11 year old. We we got her she had a trach, g-button and a cleft palate. She has had numerous surgries to repair her palate but still has a large opening. She has also gone through jaw surgery which did get rid of the trach. Thank you Debbie Oliver for telling me about this site. |
How did you hear about Cleft Advocate? | Debbie Oliver |
Name | Michelle |
mheltonm@netscape.net | |
Homepage | |
State or Country | TEXAS |
Comments | My son was born 11-9-01 with bilateral cleft lip and palate. |
How did you hear about Cleft Advocate? | www.FACES-cranio.org |
Name | TAMMY |
TPCJKEL@HOTMAIL.COM | |
Homepage | |
State or Country | MICHIGAN |
Comments | MY SON WAS BORN WITH CLEFT LIP/PALATE. LIKE MOST PARENTS I DID NOT KNOW HE WAS GOING TO BE BORN WITH HIS CLEFT. WHEN HE WAS FIRST BORN AND THE DOCTOR HANDED HIM TO ME I LOOKED AT HIM AND HANDED HIM RIGHT TO MY HUSBAND. IT WAS A VERY HARD SITUATION TO SWALLOW. AS PARENTS WE HEAR ABOUT CHILDREN BORN EVERY DAY WITH ABNORMAL FEATURES BUT WE NEVER THINK IN A MILLION YEARS THAT IT COULD HAPPEN TO OURSELVES. MY SON HAS GONE THROUGH HIS FIRST LIP AND PALATE SURGERY, HE LOOKS GREAT! WE STILL HAVE ALONG ROAD AHEAD OF US. I LOVE MY SON VERY MUCH AND WOULD NOT TRADE HIM FOR ANYTHING IN THE WORLD. MY SON IS 17 MONTHS OLD AND IS SO LOVBLE.I STILL HAVE TIMES WHEN THINGS ARE VERY STRESSFUL FOR ME, I HAVE A DAUGHTER WHO IS 2 YRS. AND 8 MO. OLD, MY HANDS ARE FULL. I'M VERY GREATFUL THAT THERE ARE SUCH ORGANZATIONS WITH HELPFUL INFORMATION AND SUPPORT. |
How did you hear about Cleft Advocate? | MARCH OF DIMES |
Name | Billy Wolfe |
paulwwolfe@yahoo.com | |
Homepage | www.ctdrifters.com |
State or Country | Pennsylvania |
Comments | I just wanted to say thank you, to the many parents out there who have been blessed with a child that has either a cleft lip or palate. As I was born with a cleft palate many years ago, and over the years I've been made fun of by classmates as well even adults. I have been called "retarded", "crazy" and many other things. I ask you to please be there for your child, never let them be afraid of what they feel at times. If they are hurting, let them be free to express themselfs when someone calls them anything but beautiful. Be there in both the good times, and especially in the sometimes hard moments of their lifes..but be there for them with a hug as well alot of love and understanding! With all my love, for happiness as well a good and enjoyable family life. Sincerely, Paul "Billy" Wolfe Charlie Thomas' Drifters Rock & Roll Hall of Fame (1988) Rhythm & Blues Pioneer Award (1999) Vocal Group Hall of Fame (2000) |
How did you hear about Cleft Advocate? | AboutFaceUSA/Rickie Anderson |
Name | Lea Ann |
Sberg@bergrobesonconnor.com | |
Homepage | |
State or Country | Illinois |
Comments | This is my first visit to Cleft Advocate. It is a great web site. My daughter is 4 1/2 months old and was born with a cleft palate. She will have surgery to repair it when she is about 10 months old. It is nice to know that there are other people that know what we are going through. |
How did you hear about Cleft Advocate? | Internet |
Name | Kay |
kking3@ec.rr.com | |
Homepage | |
State or Country | NC |
Comments | When my son was born with complete unilateral cleft lip and pallet there was NOTHING like this. Looks like a nice spot for help. Taylor is now 15 and going for Orthongraphic (sp) surgery March 04'- - upper and lower. Any suggestions on this would be appreciated. Kay |
How did you hear about Cleft Advocate? | surfing |
Name | michelle H |
lashel4u@yahoo.com | |
Homepage | |
State or Country | NC |
Comments | My grandson was born with a cleftlip 10-27-03. His 1st surgery is set for Jan 27 04. I'm researching the cleftlip sights to educate myself and my family to have a better understanding of our situation and to learn of other familys experances. Michelle H. NC |
How did you hear about Cleft Advocate? | googles search/ eckerd health source |
Name | Laura |
shane9203@yahoo.com | |
Homepage | |
State or Country | Florida |
Comments | my son was born with unilateral lip and palate. Ive read alot of articles on families and a few of them keep mentioning about there child's gumline. What does that mean |
How did you hear about Cleft Advocate? | online |
Name | Scott &Chrissy |
saaforever@wmconnect.com | |
Homepage | |
State or Country | wv |
Comments | WE THINK THIS WEB SITE IS GREAT IT HAS ALOT OF HELPFUL INFORMATION ON IT. WE HAVE A 2YEAR OLD BOY AND A 3MONTH OLD GIRL.SHE WAS BORN WITH CLEFT PALATE WE HAD NO CLUE WHAT IT WAS. THATS WHY WE LIKE THIS WEB SITE IT TELLS SO MUCH. |
How did you hear about Cleft Advocate? | SEARCHING ON THE INTERNET |
Name | Mary Jenkins |
mmjenk748@aol.com | |
Homepage | aol |
State or Country | Trenton, New Jersey |
Comments | Mother of a new born son born with a bilateral cleft lip. Guess what no palet issues! Has undergone 2 surgeries and now we await number 3. First two stiches came dehist! Now we will await the full repair. Trying to sign up but having problems? |
How did you hear about Cleft Advocate? | search engine |
Name | Maria Theresa Almeida-Ygaña |
thetygana@yahoo.com | |
Homepage | |
State or Country | Manila, Philippines |
Comments | This is very informative. Even though my Keith David (2 yrs and 8 mos.) was already repaired from cleft lip and palate there are still a lot of questions left in my mind that cleft advocate answered. And i know i will learn more. |
How did you hear about Cleft Advocate? | Im a member of cleftkids, and from debbie oliver's e-mail to the group |
Name | Robin |
robinremele@sbcglobal.net | |
Homepage | |
State or Country | Illinois |
Comments | My friend Di told me about your Website, sure wish we had someone to network with when our children were born. I have an 8 year old son that was born with bilateral cleft lip and palate. After three surgeries he's on his way. He has been a joy to our family, and we wouldn't want it any other way. If there are any parents out there looking to network or have a child looking to network with my son and share thoughts, feelings etc. about their facial difference, we look forward to hearing from you. Thank you for this great Website. |
How did you hear about Cleft Advocate? | Friend |
Name | Mary Rose |
itsallyou2@aol.com | |
Homepage | |
State or Country | Illinois |
Comments | I have a 4 month old daughter with a bilateral cleft palate. It would be nice to talk with other Parents, or Kids of cleft palates. Thank You. |
How did you hear about Cleft Advocate? | A Parent |
Name | Nedra & Charles |
cheer4golf@adelphia.net | |
Homepage | |
State or Country | VA |
Comments | Our son Carlos has a UCLP and his first surgery is on 1/30/04. |
How did you hear about Cleft Advocate? | surfing |
Name | Bliss |
blond_e12@hotmail.com | |
Homepage | |
State or Country | Va, USA |
Comments | I am 16 years old and i was born w/ cleft lip and partial palet. I have had multiple surguries. I am having my last ones this February 2, and my surgeons are going to reconstruct my nose b/c of a deviated septem, do laser surgery on my scars and fix my upper lip. I am very excited to be coming upon my last ones and if anyone needs information or just wants to talk about this topic, just feel free to email me! And remember ive been through it all and i turned out just fine so no worries!! |
How did you hear about Cleft Advocate? | Searching the Internet |
Name | Kelly |
txwalkers@wmconnect.com | |
Homepage | |
State or Country | texas |
Comments | My daughter was born with cleft lip and pallet, she is 15 and in need of orthodontics. We are a low income famly and the chips program as wellthe medicade program offer no orthodonic help. I have been on a waiting list of chcn for 2 years now but they have not recieved funding for the last 2 years. I am running out of time and am desprate for help. Do you know of any organization that can help. |
How did you hear about Cleft Advocate? |
Name | Kristy Magliocchetti |
we5magsluvcher@netzero.net | |
Homepage | |
State or Country | Washington, USA |
Comments | Thank goodness for sites like yours! Thank you! |
How did you hear about Cleft Advocate? | An online Cleft group I am in. |
Name | obas |
obas@mugu.com | |
Homepage | |
State or Country | london |
Comments | i don land here oooooooooo |
How did you hear about Cleft Advocate? | from friends |
Name | Jeremy Woods |
Wolfjack1280ad@yahoo.com | |
Homepage | none |
State or Country | USA |
Comments | I am 23. I was born with a unilateral cleft lip and pallet. Though some would consider it a mild case it has never the less continued to plague me my entire life. I have often wanted to talk to others with the same deformity about thier thoughts on the matter. However I have always felt uncomfortable with aproaching others about it, that maybe they might be offended by my inquiry. My grandmother was born with a cleft lip but I have never been able to discuss it with her. My mother said that when I was born my Grandmother cried and blamed herself. I am not looking for sympathy, I never have. I would just like to talk to someone who might understand what it is like. If anyone wishes to contact me perhaps we can correspond via e-mail. Maybe the anonymity of the internet will provide a way for me to finally communicate with others of a like mind. If not I wish you all the best in life. |
How did you hear about Cleft Advocate? | Searching |
Name | Tom Smith |
10456 | |
Homepage | |
State or Country | england |
Comments | I Have A Cleft Lip People Always Bully Me And Call Me Names i Am Only 11 This Is Very Stressful And I Often Am Upset I Am Soon Having An Operation I Am Chuffed |
How did you hear about Cleft Advocate? | On Googel Search Engine |
Name | Carter Boughner |
cart76@aol.com | |
Homepage | n/a |
State or Country | CT |
Comments | Hi- My daughter is due 4/15/04 and is being born with a UCLP. We just found out last week and have appreciated all the support and information that this site has to offer. Thanks! |
How did you hear about Cleft Advocate? | other cleft parents |
Name | andy&laurie morrison |
L885287@yahoo.com | |
Homepage | |
State or Country | N.Y. |
Comments | I AM A 43 YEAR OLD MAN WITH CLEFT PALET&LIP I WAS LUCKY TO HAVE A FATHER THAT DIDNT HAVE THE MONEY BUT STILL MADE SURE I GOT THE BEST TREATMENT POSSIBLE AND KNOW A WONDERFULL WIFE THAT LOVES ME EVEN WITH A CLEFT. I WOULD BE GLAD TO TALK TO ANY CHILD OR PARENT ABOUT MY CHILDHOOD TO ADULTHOOD |
How did you hear about Cleft Advocate? | SURFING |
Name | Karla Groves |
kag811@hotmail.com | |
Homepage | |
State or Country | Kentucky |
Comments | I need help? My sixteen year old niece was born with a double cleft lip and cleft palate, she has very low self-esteem. I would like to find a way to help her. So if you have any suggestions please e-mail me. |
How did you hear about Cleft Advocate? | looking for help |
Name | Deborah |
froglover2003@hotmail.com | |
Homepage | |
State or Country | Tennessee |
Comments | My 6mo. old son had cleft lip repair surgery four days ago. I was so scared that he wouldn't wake up from anesthesia. I wish I would have found this web-site before now. I think I would have been a lot calmer. My son is stubborn and didn't want to take to the syringe method, so he had almost no food for three days. Does any one who has been through this have any ideas? Or should I just press on? |
How did you hear about Cleft Advocate? | web search/brother-in-law |
Name | orna |
ornas57@yahoo.com | |
Homepage | israel |
State or Country | israel |
Comments | hi, our sun asaf was born 12 years ago with cleft palet a few months after the war with iraqe. we hrared there is aconection to the medicines my husband took in the army.we would like to know if somebody knows something about it. thank you! orna&moti |
How did you hear about Cleft Advocate? | internet |
Name | Joyce Bentz |
jbentz@huntingtonindiana.com | |
Homepage | |
State or Country | USA |
Comments | I've been a member for a few months now and I'm SO HAPPY I found a site that shows the support and open mindedness that families NEED to deal with clefting. I have 2 boys, Joe-6 and Ben-5, complete bilateral cleft lip palate and alvelor ridge. He's been through 5 surgeries so far. THANKS Debbie for opening my eyes to a GREAT bunch of people!!!! |
How did you hear about Cleft Advocate? | E-mail conversations with Debbie |
Name | Marci Stark |
m.a.stark@earthlink.net | |
Homepage | |
State or Country | Ohio |
Comments | I am so thankful that I found you. Not only have you been able to provide valueable resources and information but true friendship also. Thanks so much CA. I don't know what I would do without your support. |
How did you hear about Cleft Advocate? | Google Search |
Name | Denika |
DenikaMenis@aol.com | |
Homepage | www.angelfire.com/hero/menis |
State or Country | North Carolina |
Comments | I cannot believe that I have not signed this guestbook before now! Debbie, I don't think I can ever tell you how much you, Erin, Cleft Advocate, and everyone here mean to me. Thank you so much for providing such a wonderful site and source of support for us! |
How did you hear about Cleft Advocate? | I don't even remember! I think maybe Kiku told me about it? |
Name | Julie |
JeffJulieJill@aol.com | |
Homepage | http://www.growthspurts.com/view.asp?s=64211&src= |
State or Country | South Carolina |
Comments | Cleft Advocate is a wonderful web site! Thank you to Mrs. Debbie Oliver for all that you do! Your daughter, Erin, is such an inspiration! I hope my daughter, Jillian, grows up to have Erin's positive outlook on life. Erin is so beautiful on the inside and out! My husband and I feel blessed to have found Cleft Advocate (CA)! It is an informative web site, and the people we have met through CA are always ready to answer questions and offer support. Thanks for everything! Cleft Advocate is truly an outstanding little place on the internet! Love and Best Wishes to all! :-) |
How did you hear about Cleft Advocate? | surfing the net |
Name | sarah |
s_penketh@yahoo.com | |
Homepage | |
State or Country | wales |
Comments | This is a fantastic site! Someone always has an answer to your questions. The people on CA are the best! You ROCK guys! From the bottom of my heart THANK YOU!! :) |
How did you hear about Cleft Advocate? | Internet search |
Name | Emma Royston |
ecroyston@aol.com | |
Homepage | |
State or Country | UK |
Comments | This is such a great site! You can learn all about other people's experiences of clefts, whether they are parents of cleft children, or the children themselves. |
How did you hear about Cleft Advocate? | My friend Sarah |
Name | Shirley |
shirleyann120@hotmail.com | |
Homepage | |
State or Country | Bath, UK |
Comments | This site is fantastic - if you are even thinking of join, don't think, just sign up. So many people with so much information to share. It is like one big family. I cannot believe the enormous amount of information contained within these pages - thanks Debbie! I'm also a member of CLAPA in the UK which is another great source of info for people in the UK. |
How did you hear about Cleft Advocate? | I googled :D |
Name | Liz and Gregg |
gef@one.net | |
Homepage | |
State or Country | Ohio, USA |
Comments | I am so glad to have found this site. My husband and son are both cleft affected and we've gotten a lot of help from our new "family". Thanks so much to Deb, Erin and EVERYONE who participates to help make our lives easier. |
How did you hear about Cleft Advocate? | Met Deb while on another Cleft list |
Name | Cheri |
CheriShanahan@aol.com | |
Homepage | none |
State or Country | Colorado |
Comments | I am a graduate student in Speech-Language Pathology. I visited your as a result of a search I was performing to find websites that were appropriate for parents of children with cleft lip and palate. I would like to say that I was very impressed with your site, not only the information you provide directly in your site, but also the links you provide for the parents to find more information. I will definitely pass your website on to our professor as a definite site parents should visit. |
How did you hear about Cleft Advocate? | hit and miss search |
Name | Heather |
Heather-Andy@hpownall.fsnet.co.uk | |
Homepage | |
State or Country | United Kingdom |
Comments | Hi I am Heather mother to John age 8 and triplets Amy, Harry and Jack age 5. Amy was born with a severe unilateral cleft lip and palate and has had 7 ops to date (inc ears!) I am really lucky in the Uk we have a fantastic cleft team and we have CLAPA which I am a member of, which really helps with any problems a family can have. Times have been tough, when the triplets were born my dad died and I think that alone gave me the strngth to cope as a cleft is nothing compared to death. Amy is a fantastic child, absolutely beautiful, full of life and confidence, she has loads of friends and belongs to many groups inc ballet. I would just like to say to everyone be positive! Heather UK |
How did you hear about Cleft Advocate? | from Samrt Groups in UK |
Name | Beth Mayfield |
munkygrl_1999@yahoo.com | |
Homepage | |
State or Country | Oklahoma |
Comments | I was born in 1979 with a cleft palate, and 23 years later my second son, Hunter was born with a cleft palate in October 2002. With my son I have been very unsuccessful in obtaining information and support, until a week ago I met another mother that told me about your website. I am very pleased to have finally found such information and to know that we're not alone. |
How did you hear about Cleft Advocate? | another cleft palate mother |
Name | kirshtin |
babydoll92298@aol.com | |
Homepage | |
State or Country | ca |
Comments | hi i am looking for any oarents out there that know if any of their children were born with a cleft palet, and maybe pre-eclampsia caused it. no one in either side of the family have any complications with this. i just want to know, cause my twin boys were born premature due to pre-eclampsia, and were born with cleft palet and peir robin sequence. the peir robin sequence has caused them to have low deaf tones and may have to wear hearing aids. they are having a minor surgey to do testing on this. they are only 9 monyhts and am scared to death of them being put under so at such a young age. please help. ia m so glad i found this site. if anyone can help please do. thank you so much and god bless. kirshtin |
How did you hear about Cleft Advocate? | internet search |
Name | Lee |
endsnpicks@mchsi.com | |
Homepage | |
State or Country | North Carolina |
Comments | ....A place that kept me sane at a time that insanity reined.... |
How did you hear about Cleft Advocate? | Searching the web |
Name | Jennifer Ort |
theorts@bigzoo.net | |
Homepage | www.angelfire.com/magic/jennycherie |
State or Country | Missouri |
Comments | I am Jennifer and my oldest child, Jarom, was born with a unilateral cleft lip and palate. He has had 4 surgeries to repair his cleft and is preparing to have a bone graft in a year or so. We have enjoyed the support and camaraderie of the Family to Family Connection email list and I love the wealth of information on this website. |
How did you hear about Cleft Advocate? | from a nice lady named Joyce! |
Name | Corrina Aziz |
corrina_aziz@rogers.com | |
Homepage | |
State or Country | Canada |
Comments | This website is very valuable and informative. My daughter Natalie was born with cleft lip and palate in July 2002. |
How did you hear about Cleft Advocate? | Surfing Web |
Name | Annette Woods |
annettew99@cox.net | |
Homepage | |
State or Country | TX |
Comments | Thank YOU Erin & Debbie if it wasn't for this wonderful group we would never have known that Sarah need a team & no telling where we would be at today. Thank you everyone for your support & being here for us. |
How did you hear about Cleft Advocate? | searching on the internet |
Name | Peggy Hoge |
peghoge@hotmail.com | |
Homepage | |
State or Country | CA |
Comments | Thank you Debbie. This site has been an inspiration for me and has helped us with information. Thank you Erin for letting get a view of what is possible come for our daughter. You have such great strength. I hope my daughter can be as strong. |
How did you hear about Cleft Advocate? | web search |
Name | Monica |
riminez@aol.com | |
Homepage | |
State or Country | NM |
Comments | I really, really love this group. My fourth son was born with a cleft lip, hard palate, and gum. At first I felt scared and overwhelmed with talk of surgeries. This group comforts me everytime. Thanks to all who answer questions. Crazy or not. You're all so helpful. |
How did you hear about Cleft Advocate? | On the internet. We had a million questions. Luckily we found this wonderful place. |
Name | Courtney McKenny |
mckenny@mac.com | |
Homepage | http://www.geocities.com/courtneymckenny/page1.html |
State or Country | Missouri |
Comments | cA has been a lifesaver for my family and I. James Kieran is a wonderful baby and the cA family has helped with so much! I hope I can do for someone else what they have all done for us. Check out James Kieran in the cA Gallery! |
How did you hear about Cleft Advocate? | internet search |
Name | Darci |
darcilh@cox.net | |
Homepage | |
State or Country | Oklahoma |
Comments | Cleft Advocate is such an awsome extended family to me! I don't know what I'd do without them! The resources here are wonderful! |
How did you hear about Cleft Advocate? | web search |
Name | Yuliya Zhinzherova |
yuliyaz@yahoo.com | |
Homepage | |
State or Country | NY |
Comments | This site has been a great help. |
How did you hear about Cleft Advocate? | from Milli's post on babycenter.com |
Name | Tricia Longsdorf |
littletreasure@cox.net | |
Homepage | |
State or Country | Nevada |
Comments | This network has been a huge support to myself and my family. We are so appreciative. |
How did you hear about Cleft Advocate? | Debbie Oliver |
Name | Whitney |
Whitneyreyes@netscap.net | |
Homepage | |
State or Country | Long Island, NY |
Comments | Reading and posting on this website has helped me so much with not only cleft questions but parenting support. Thank you to all who are involved. |
How did you hear about Cleft Advocate? | Another mother on the network |
Name | Tammy |
tammy@manlyyouthsoftball.org | |
Homepage | |
State or Country | Iowa |
Comments | Great site! I'm looking for help with insurance issues and have been able to utilize a lot from this site so far. Looking forward to seeing more states with mandatory coverage - including Iowa! |
How did you hear about Cleft Advocate? | searching the net |
Name | Jennifer |
ellingtonjl@hotmail.com | |
Homepage | |
State or Country | MO |
Comments | New to cleft advocate :) My son is almost two, and was born with a UCLP. I spoke to Debbie the other day about our local support group and wanted to get on this site :) Would have loved this site when my son was born! THANKS!!! |
How did you hear about Cleft Advocate? | Friend |
Name | Kerrie Harris |
qtptuti1024@aol.com | |
Homepage | |
State or Country | NV |
Comments | Hi Just looking around! Talked to Debi this week. My son had skull surgery . Just looking for support and services . |
How did you hear about Cleft Advocate? | cranioteam |
Name | Webmaestro |
webmaestro@ivillage.com | |
Homepage | http://www.metropolis5000.com |
State or Country | Florida |
Comments | Very nice and useful website. Please visit my website!!! :) |
How did you hear about Cleft Advocate? | Friend Good Alien told me |
Name | Di |
dianenadelhoffer@att.net | |
Homepage | |
State or Country | Illinois |
Comments | Hi Deb, Just want to let you know you are doing a great job with this site. I wish this was available when my daughter was born in 1995. And I thought I was alone out there. |
How did you hear about Cleft Advocate? | searching the web |
Name | Karen |
hannahwilkes@hotmail.com | |
Homepage | |
State or Country | Paisley, Scotland |
Comments | My daughter Hannah was born with uclp two years ago now and I've finally found some great sits from GB and abroad! Thanks, It lets me know I'm not alone! |
How did you hear about Cleft Advocate? | member |
Name | Jessica |
pooh0376@yahoo.com | |
Homepage | |
State or Country | Wisconsin |
Comments | GLAD TO BE A PART OF THIS GREAT GROUP! |
How did you hear about Cleft Advocate? | INTERNET |
Name | Carolyn |
calbert116@yahoo.com | |
Homepage | |
State or Country | New York |
Comments | Debbie, The site is great, your work is greater, and you are the greatest!!! Thank you for all you do for all of us. I don't know what I would without you and Cleft Advocate. Carolyn |
How did you hear about Cleft Advocate? | Surfing the Net |
Name | Tonia Satkowski |
Tonia27@aol.com | |
Homepage | |
State or Country | Monroe, Michigan |
Comments | Debbie, I can not believe I haven't signed your guest book!!!! I love your website and have found a lot of valuable information on it and also have met a lot of wonderful people. Thanks so much for making my Son Tyler The Featured Families for the month of April 2003. You did a wonderful job with the pictures and story that I submitted. It is so reasuring to know that there is a support system out there, keep up the good work. Hugs, Tonia |
How did you hear about Cleft Advocate? | Member |
Name | Melissa House |
dhouse@wadsnet.com | |
Homepage | |
State or Country | Ohio |
Comments | What a wonderful site. There is so much information here, and the support from the families is tremendous. We have found our second family!!! Melissa, Mom to Jared (5/24/92) ucl,bcp,cleft alveolar ridge |
How did you hear about Cleft Advocate? | yahoo search |
Name | Angela Norris |
babygirl@carolina.net | |
Homepage | |
State or Country | North Carolina |
Comments | Hello my name is Angela and I am now 33. I was born with multiple birth defects. My second home after birth was Duke Medical Center, through the Crippled Children's Fund. My mother was told there that with all the birth defects I would not live to see 13 years old. Well at the age of 18 I was transferred to Chapel Hill for further treatment. All through school the harrassment never stopped, but you must go on. Through the years you learn to become a fighter and survive no matter what. I have accomplished serveral college degrees and also work for an excellent non-profit organization called Robeson Health Care Corporation. I just had craniofacial surgery last year at Chapel Hill, NC. I have complete confidence in Dr. Tim Turvey and his staff as well as the whole department. At Chapel Hill that have a Craniofacial / Cleft department that gives you their undivded attention. If myself or my mother can be of any help please let us know. I would be glad to do anything I possibly can to help others or to tell my story to others. |
How did you hear about Cleft Advocate? | member |
Name | Terry |
terry@terrybiusband.com | |
Homepage | www.terrybiusband.com |
State or Country | USA |
Comments | Hey Debbie and Erin! Just checked out your website...amazing work you've got going there. Down right proud of your efforts!!! The photo's and personal stories of triumph are an inspiration. Cool that it's become such a large organization. How nice to know that your efforts can enrich the lives of others to such a great degree. Allowing a child to overcome the ostracism and cruelty that can be such a social obstacle to personal growth...GREAT JOB!!! Terry |
How did you hear about Cleft Advocate? | you wrote me after visiting my website due to the CD's I gave you in the LV restaurant! |
Name | ALICE HUMPHREY |
alisha@progressivetel.com | |
Homepage | |
State or Country | GEORGIA |
Comments | I REALLY ENJOY YOUR WEBSITE!!!!! |
How did you hear about Cleft Advocate? | INTERNET |
Name | Marty Karlson |
Hkarls@aol.com | |
Homepage | |
State or Country | Bend, Oregon |
Comments | I'am A 25 year old man with a wonderful outlook on life on this one earth. The gift that we have been given may not be the gift of choice but it's still a gift. Use that gifted heart that you have and show your loved ones, friends and your community that it's not all ways the phisical pain that hurts you, but the pains of low self-esteem. So don't hold back all that hurt please sare this with others it helps you live a better life and for the others to understand how wonderful all walks of life are. |
How did you hear about Cleft Advocate? | yahoo |
Name | Gösta O. |
drahelvete4@yahoo.se | |
Homepage | |
State or Country | Sweden |
Comments | Hello. I´m from Sweden, i was born with a cleft lip. I wonder if any of you guys know any athletes who were born with a cleft lip/palate? I know Blaise Winter was but do you know anyone else? I´ve heard that Frank Murphy (NFL) was too but i´m not sure.. please email me if you know any! Grateful for answers. |
How did you hear about Cleft Advocate? | looking around |
Name | Kari Berry |
bytchee_nc_gal@yahoo.com | |
Homepage | |
State or Country | NC, USA |
Comments | This is a wonderful sit for links, pictures, and information! Thanks so much for helping others to understand Clefts.... |
How did you hear about Cleft Advocate? | member |
Name | Andi Puckett |
luckpuckett@mail.com | |
Homepage | |
State or Country | California |
Comments | Love the new look, Debbie. Can't believe I didn't sign your guestbook before. My daughter Hannah was born with a ucl. Her palate was intact, and after all the reading I've done, I realize how lucky we were. I love this site, the people are caring and knowledgable. Thanks Debbie. |
How did you hear about Cleft Advocate? | Cleft Club -- Response from Debbie |
Name | Tammy Lasley |
las10734@aol.com | |
Homepage | |
State or Country | Clermont, FL |
Comments | My 3rd child, Joey, was born with a UCLP. He is also the best thing that happened to all of us!!!! This site really helps with the questions. Thanks. |
How did you hear about Cleft Advocate? | search engine |
Name | Christi |
cstepro@aol.com | |
Homepage | |
State or Country | Delaware |
Comments | mom to Cayla (8yo nca), Cassie (2yo ucl&soft palate), & baby (edd 7/14/03) |
How did you hear about Cleft Advocate? | cleft talk |
Name | candy |
cchartie2003@yahoo.com | |
Homepage | |
State or Country | michigan |
Comments | I have an 18 month old little girl, Hannah. She was born with ucl and ccp |
How did you hear about Cleft Advocate? | web |
Name | Corrie |
CoKennette@hotmail.com | |
Homepage | http://hometown.aol.com/cokennette/index.html |
State or Country | SC/NC |
Comments | Thank you for sharing Blake's story! |
How did you hear about Cleft Advocate? | through yahoo Cleft club |
Name | Hollie |
hollied@pshift.com | |
Homepage | none |
State or Country | vermont |
Comments | i have a 2 and a half year old daughter born with cleft lip and palate and would love to talk to other parents or grand parents |
How did you hear about Cleft Advocate? | a friend |
Name | sarah |
s_penketh@yahoo.com | |
Homepage | |
State or Country | wales |
Comments | i was born with a bilateral cleft lip and palate. i would like to find an e-pal age group doesn't matter. |
How did you hear about Cleft Advocate? | debbie |
Name | Sarah |
imamcquaynow@hotmail.com | |
Homepage | |
State or Country | Evansville, IN |
Comments | Thank you for giving us a network of people who truley understand. I am so thankful to be part of this community. |
How did you hear about Cleft Advocate? | Milli :) |
Name | Kathy Brady |
katbrady53@aol.com | |
Homepage | |
State or Country | Ohio |
Comments | This is a wonderful site! I am the grandmother of 2 month old Zachary, who lives with me, his mother,Great-grandmother and two Aunts! We are very happy this avenue is available for support, enlightenment and pertinent information. Thank you. |
How did you hear about Cleft Advocate? | Through Wide Smiles |
Name | Milli |
Nukku@nc.rr.com | |
Homepage | http://www.angelfire.com/realm/ofdavis |
State or Country | North Carolina |
Comments | Can you believe I've gone this long without signing this guestbook? Deb and Erin, you are wonderful people who continue to inspire us each day. I can only hope that my Rowan will be so self assured when he is a teen. |
How did you hear about Cleft Advocate? | It's been so long I can't remember |
Name | Mickelle Marsiglia |
mickandy8@yahoo.com | |
Homepage | http://groups.msn.com/TheMarsigliaFamily/welcome.msnw |
State or Country | Indiana |
Comments | I have twin boys born on 2-23-02. Thomas, Baby B, was born with a Bilateral Cleft Lip and Palate. His lip has been repaired, 8-22-02. |
How did you hear about Cleft Advocate? | Internet |
Name | barbara dean |
barbie91267@aol.com | |
Homepage | |
State or Country | new york .roch |
Comments | hi, this site is god sent. my son who now is 8yrs has c/l/p .he would love to hear from other childern . he has never meet others with cleft lip and palet . thxs mommy (adam)9-24-94 |
How did you hear about Cleft Advocate? | mother |
Name | Somer Wright |
somertyme22@aol.com | |
Homepage | |
State or Country | Atlanta GA |
Comments | Corrie, you have a very inspiring story. I hope all is well at Western. I am happy to hear that you are finished. |
How did you hear about Cleft Advocate? | Corrie Kennette |
Name | dorothy collin horne |
dchorne@providencpres.org | |
Homepage | none |
State or Country | south carolina |
Comments | i enjoyed reading about corrie! |
How did you hear about Cleft Advocate? | Corrie is a former student of mine at Winthrop! |
Name | Lesley |
lesley999@hotmail.com | |
Homepage | |
State or Country | Manchester,UK |
Comments | Hi to everyone! My son Joshua was born nearly 7 years ago with a BCL+P, he has also been recently diagnosed with Dysprexia. So lots of falling over, bumps and cut knees. He has had speech therapy (On-going)and grommets and had most of his surgery at 4 and 14 months. It would be great if Joshua could get an E-mail Pal through here! |
How did you hear about Cleft Advocate? | Googled cleft! |
Name | Mellanie Radenz |
ckdl6@allstate.com | |
Homepage | |
State or Country | Houston, Texas |
Comments | This site is just so wonderful. I love the cleft chat. I'm not sure where I would be if I would not have found this site and the many wonderful people here. Our son Wyatt was born 5/15/01 with a bilaterial cleft lip and palate. We've had 4 surgeries in 10 months and are expecting another by the time he is 2 1/2 or 3. Thanks Debbie for all your hard work and support !! We love you ! Regards, Mellanie, Gordon and Wyatt Radenz |
How did you hear about Cleft Advocate? | yahoo |
Name | Erica Wood |
Dolphinlovr715@aol.com | |
Homepage | |
State or Country | Florida |
Comments | My daughter was born with a cleft palate. She had her 1st surgery when she was 11 months. She needs another surgery now or sometime soon. I have no insurance and need to get her this medical attention soon because of her speech. She is 4 years old now. Are there any programs out there that help low income families with the cost of this type of surgery? All response will be greatly appreciated. Sincerely concerned mother, Erica Wood |
How did you hear about Cleft Advocate? | The Parade news magazine |
Name | Heather Bird |
hmbird@austin.rr.com | |
Homepage | |
State or Country | Texas |
Comments | I have an 11 month old son with unilateral cleft lip and palate. I enjoyed your website. I am from Austin Texas and have discovered no support groups here. I am hoping to start a support group and web page promoting early repair of clefts and other options available. I feel that families need to know that there are options and that they don't have to feel helpless. I would really like to be able to share information with other families. If anyone has any suggestions on starting a web page or support group, it would be helpful. |
How did you hear about Cleft Advocate? | Kelly Lanham |
Name | hunyuanqi |
hunyuanqi3@yahoo.com | |
Homepage | |
State or Country | Malaysia |
Comments | i was born on cleft lip & palate,wish to find who has same with me from Malaysia. |
How did you hear about Cleft Advocate? | from meetup.com |
Name | Shynnee Roby |
shynnee_roby@hotmail.com | |
Homepage | |
State or Country | CA |
Comments | I truly have been wanting to find a way to support other young people with my same birth defect and possibly prepare them for whats ahead. I'm 21 now didnt have this kind of support then. This is truly an answered prayer. |
How did you hear about Cleft Advocate? | A good friend |
Name | Maggie Panther |
margarep@blueridge.org | |
Homepage | |
State or Country | NC |
Comments | I'm glad to know about your very useful organization! |
How did you hear about Cleft Advocate? | community member |
Name | crystal taylor |
crysp4259@yahoo.com | |
Homepage | |
State or Country | michigan |
Comments | im pregnant w/ a child that could possibly have a cleft pallet and lip. his father has both and it runs in the family. any info or suppot would +be so helpfull thank you. Crystal taylor |
How did you hear about Cleft Advocate? | web links |
Name | Paul R. Marshall |
Paul@tourette.info | |
Homepage | http://paul.tourette.info |
State or Country | CA |
Comments | Looks like Erin is truning out to be a beautiful young lady regardless. I can think of a young chickling who did not start out looking so well, however, that duckling turned into quite the beauty when it swaned.![]() Paul Marshall |
How did you hear about Cleft Advocate? | Webring |
Name | Tom Copestick |
tcopestick@dcmde.dcma.mil | |
Homepage | |
State or Country | New Jersey |
Comments | I'm amazed. I'm overwhelmed. In all my 40 years I have never known that there was an advocacy group for those of us with Cleft Palates and Lips. I was born 40-years ago with both a Cleft Palate and Lip. At the age of 3-months, I received my first surgery at Children's Hospital in Philadephia. The surgery was a sucess as I was told by my parents. I have struggled emotional over my early school years with the harrassment of children who didn't understand or care to understand my condition. I never felt so alone. Until age 17, I had reconstructive bridge work completed on my upper jaw since many of my secondary teeth failed to come in properly. Finally, I was able to smile - unfortunately, my parents at the time spent a small fortune on my dental bills. After 12-years of schooling I was finally able to smile for the camera. I haven't been able to stop smiling since. Currently, this past summer, my 23-year old bridge work fell out. I was informed by my current insurer that the cost of a "new" bridge would not be covered by insurance. Here's were my battle begins. I am thankful for this website and others like it that I have found over the past 2-days. I am inspired and thankful to hear that I'm not the only one in such a battle. My battle begins today with the insurance company - for I will always have a smile on my face. |
How did you hear about Cleft Advocate? | Searched the Web |
Name | Perlita Flores |
freakypearl69@cs.com | |
Homepage | |
State or Country | California |
Comments | i guess this will be the second time signing the guest book....but i just had to do it again.....i'm 19 now and well being born with a bilateral cleft lip and palate was not the easiest thing to handle but i have....its the greatest blessing any of us could recieve |
How did you hear about Cleft Advocate? | cleft chat |
Name | Tina |
clactongirl2002@yahoo.co.uk | |
Homepage | |
State or Country | uk |
Comments | i amk 18 and my son will be 1 on october 1st he was born witha unilateral cleft lip and palate.it has been hard but my son pulled through real well you can now hardly notice he had a cleft.i would like to chat to others so please anyone feel free to email me. |
How did you hear about Cleft Advocate? | via cleftkids |
Name | Catherine Potter (Cat) |
catpotter2001@yahoo.com | |
Homepage | http://www.growthspurts.com/members/growthline.asp?baby=64297&src= |
State or Country | Andrews AFB, MD |
Comments | Debbie: Here all this time I thought i'd signed your guestbook ...guess not...:) thanks for making me a part of this wonderful group, and thank you for giving the worldwideweb cleft advocate. Cat |
How did you hear about Cleft Advocate? | just "walked" on in |
Name | Joanna Davis |
joey_anne79@yahoo.com | |
Homepage | |
State or Country | Nevada |
Comments | I've been trying not to cry while going through this site... I really don't know where to begin. My first memory of ever seeing someone with a cleft lip was when I was six or seven years old. My parents had taken our family to the park and one of the other moms had a cleft lip just like me! I couldn't believe that someone that looked so different could grow up, get married, and have children. I thought I was too ugly; too different from the prettty girls at school. I don't have any memory of meeting someone with a cleft lip before that. I am so proud of all you parents who are being proactive with your child's condition(s). I know what a struggle it is to be on the receiving end of such circumstances. I wish there had been such places for my parents to go and get support. Your child's life will forever be different because of how accepting and understanding you are, and continue to try to be. There are happily-ever-after endings to the surgeries, I know this for myself. |
How did you hear about Cleft Advocate? | browsing through vegasvalley.com |
Name | kim |
mark454@peoplepc.com | |
Homepage | |
State or Country | Missouri |
Comments | Love this site. It's nice to hear from others who going through the same struggles. |
How did you hear about Cleft Advocate? | browsing on the web |
Name | Michelle |
mshell_73@yahoo.com | |
Homepage | |
State or Country | Arkansas |
Comments | This site has helped my more than I can express! I have 3 boys 12, 4, 5 months my youngest was born 2/14/02 with bilateral cleft lip and palate. |
How did you hear about Cleft Advocate? | yahoo group |
Name | Pauline |
pcinok35@yahoo.com | |
Homepage | |
State or Country | Oklahoma |
Comments | I love your site!! 10 years ago when my daughter was born i didn't have a computer to get info about cleft palete's and oh my gosh was it hard to find a support group...when I did find one there was a couple of people and then they didn't do it anymore after a couple of visits because of funds...so this is just a super site for moms and dads that are new to the cleft palete situation and also for the rest of us that are still learning about cleft palete THANKS ALOT! I appreciate it so much...sincerly, Pauline Calley |
How did you hear about Cleft Advocate? | Wide smiles |
Name | Joan |
joanzz@hotmail.com | |
Homepage | |
State or Country | Nevada |
Comments | What an awesome site. Thank you Deb for all you have done to help all of us new parents out. The information you've posted is so complete. Alex(3yrs) is taking a couple years off before he starts the dental portion, but he's loving speech. I will definitely be using this site for all the information I'll need for insurance, medical & support needs. Looking forward to seeing you & your beautiful daughter again. |
How did you hear about Cleft Advocate? | Met you in person at Special Children's. Thanks for all you've done to help us. |
Name | Keri Wiseman |
keriwise@yahoo.com | |
Homepage | http://pages.zdnet.com/keri_wiseman/focus/ |
State or Country | NE |
Comments | I just wanted to submit information about our support group and thank you for your site. Our website is under construction, but continuously being updated with new information. We are the only active support group in the state of Nebraska, and have many families from Iowa and Kansas as well. |
How did you hear about Cleft Advocate? | just browsing |
Name | Tracy Conner |
FLPrincess126@aol.com | |
Homepage | |
State or Country | FL |
Comments | I just wanted to say hi to everyone. Also thanks Debbie for everything. The site is great. |
How did you hear about Cleft Advocate? | Through the cleft club |
Name | Jodi Jeffreys-Tanner |
ebabe33301@aol.com | |
Homepage | |
State or Country | FL |
Comments | I am so happy to have this support group! I am new to this site, so I am still learning what is available for more knowledge.. My son, Jerrod is now 3 1/2 with ulclp and is soooo beautiful ! I am definately blessed! |
How did you hear about Cleft Advocate? | I looked on the internet, also looked at widesmiles |
Name | Xiaoming Qin |
jenny_pie_1999@yahoo.com | |
Homepage | |
State or Country | New York |
Comments | the information very helpful and I learn so much more in one day than what I have know in theh past 25 years. |
How did you hear about Cleft Advocate? | internet |
Name | Jenny |
toonz@charter.net | |
Homepage | |
State or Country | Wisconsin |
Comments | I am new to the site, but anxious to be part of it. My son was born Sept. 1999 with an incomplete unilateral cleft lip. |
How did you hear about Cleft Advocate? | widesmiles.com |
Name | Kathryn |
kathryn@yahoo.com | |
Homepage | |
State or Country | UK |
Comments | A great site.. :) |
How did you hear about Cleft Advocate? | CLAPA website |
Name | Alayna R. Cobb |
alaynacobb@yahoo.com | |
Homepage | http://www.araweb.org/faces |
State or Country | Kansas |
Comments | My beautiful daughter was born on 9-14-00 with a complete bilateral cleft lip and palate. When Ashlie was born I couldn't find any local support groups. I got on the Internet and found widesmiles.org and have been a member there since Ashlie was about 3 months old. I heard of this site through WideSmiles. This is an awesome site that offers lots of helpful information to parents in their time of need. |
How did you hear about Cleft Advocate? | www.widesmiles.org |
Name | Sandy |
FLtjdmom@msn.com | |
Homepage | |
State or Country | FL |
Comments | I am so glad I found this site. I am a mother of 2, my son Tyler who is 4yrs old, and my daughter Jordan(4mos.)who was born with a bilateral cleft lip and palate. I have found tons of great info and inspiration here. I no longer feel alone, and I have several ways to get my questions answered. |
How did you hear about Cleft Advocate? | Parents of kids with clefts |
Name | Becky-New York |
BHM429@aol.com | |
Homepage | |
State or Country | US |
Comments | Wide Smiles provided me my first exposure to information on clefting.Thank you to Jo and Deb for the wonderful work and service and compassion they are providing on the respective sites. |
How did you hear about Cleft Advocate? | Wide Smiles |
Name | Adair |
ingrid-ada.yahoo.com | |
Homepage | |
State or Country | Zimbabwe |
Comments | Just discovered the website, and about to explore! My third child was born with uclp, just like me. I hope all this info will help him to come to terms with it and enjoy life! |
How did you hear about Cleft Advocate? | Widesmiles |
Name | Jodi |
pfiske@cros.net | |
Homepage | |
State or Country | Ohio |
Comments | Melissa is one of my good friends. I met her and her family when she placed her oldest son in my in-home daycare. He was at my house when Trevor was born. I am so proud of the way Melissa put this all together and got her family through this challange. Both of her children are beautiful. And one day they will be proud of their stong mom. |
How did you hear about Cleft Advocate? | Friend |
Name | Aimee Hamby |
Ahamby27@aol.com | |
Homepage | |
State or Country | CA/USA |
Comments | I just wanted to say, What a beautiful bunch of children you all have. Your doing wonderful. This website is a great outlet for parents and educators alike to share opinions and feelings.My son Austin was born with Joubert Syndrome, but does not suffer from the cleft.Of course we have our different kinds of problems and struggles that arise, but we are doing all we can for him!God Bless you !!!!!! |
How did you hear about Cleft Advocate? | Joubert Syndrome foundation |
Name | MICHELE COLE |
BOWSER04@AOL.COM | |
Homepage | |
State or Country | TENNESSEE |
Comments | I AM VERY PROUD TO SAY THAT TREVOR IS MY NEPHEW, AND HIS MOM IS MY SISTER! HE IS A BEAUTIFUL BOY, AND SHE IS A WONDERFUL SISTER. OUR FAMILY LOVE AND SUPPORT ALL OF THEM. THEY HAVE DONE A GREAT JOB WITH DEALING WITH THE TRAMA. I LOVE YOU! |
How did you hear about Cleft Advocate? | MY SISTER |
Name | Hope-Renee Shaffer-Webb |
deluxflower@hotmail.com | |
Homepage | |
State or Country | Virginia |
Comments | My youngest son,Daniel, was born with a unilateral cleft lip and partial palate. |
How did you hear about Cleft Advocate? | from msn community |
Name | Katie Granato |
Granato7@aol.com | |
Homepage | |
State or Country | California |
Comments | My son is 10 months old. He has a complete bilateral cleft lip, gumline and palate. It's so great to have a site like this to go to for information and resources. |
How did you hear about Cleft Advocate? | Widesmiles |
Name | Kiku |
Kiku333@hotmail.com | |
Homepage | http://growthspurts.com/view.asp?s=51582&src= |
State or Country | New York, NY |
Comments | Great page... lots of info! Our daughter Tani (bcl/p) had her lip, gum and nose surgery 12/11, and palate is happening 8/8. :) |
How did you hear about Cleft Advocate? | CCS |
Name | Suzanne |
Jones | |
Homepage | |
State or Country | New Jersey |
Comments | I have a ten month old son who was born with bi-lateral cleft lip and palate. he has gone through one surgery and will be going through the next one in a short time from now. I am very glad that I am not alone. |
How did you hear about Cleft Advocate? | yahoo search |
Name | Karla Kim |
krkim@bak.rr.com | |
Homepage | |
State or Country | CA |
Comments | Wow, where was this sit last August when I was "all alone" in the newly appointed cleft world!! |
How did you hear about Cleft Advocate? | Cleft Chat |
Name | Perlita Flores |
freakypearl69@cs.com | |
Homepage | |
State or Country | California |
Comments | i loved your web site!!!!!! |
How did you hear about Cleft Advocate? |
Name | Kristi |
kristi@simplykristi.com | |
Homepage | http://www.simplykristi.com/ |
State or Country | USA |
Comments | Great site, Deb and Erin! There's a lot of great information here. |
How did you hear about Cleft Advocate? | Deb and Erin |
Name | Steve & Lisa McChesney |
mspro1@yahoo.com | |
Homepage | www.bullyfreekids.com |
State or Country | Florida |
Comments | Our thoughts are with all parents who have challenges raising their children. The greatest thing is that all children are perfect. |
How did you hear about Cleft Advocate? |
Name | Darlene Chisholm |
enjoygoodhealth@cox.net | |
Homepage | |
State or Country | Virginia |
Comments | Debbie, you and Erin define inspiration. What a great site with lots of help and information. I will pass it on! |
How did you hear about Cleft Advocate? | Debbie Oliver |
Name | Emily |
espinosa3@earthlink.net | |
Homepage | |
State or Country | CA |
Comments | Lots of great info! |
How did you hear about Cleft Advocate? | Deb |
Name | Rhonda Zajac |
PartyPlace101@AOL.COM | |
Homepage | |
State or Country | Arkansas |
Comments | My daughter was born on 2-27-01 with cleft lip and cleft palate. |
How did you hear about Cleft Advocate? | Parents of Kids with Clefts |
Name | Deanna Grabelle |
DeannaGrabelle@yahoo.com | |
Homepage | |
State or Country | Virginia |
Comments | I enjoyed this site... it was very helpful. |
How did you hear about Cleft Advocate? | Cleft kids |
Name | Caroline |
cadillacaro@yahoo.fr | |
Homepage | |
State or Country | Pa |
Comments | Thank you all for all this help! I really liked it a whole lot! It's a great page! Good job! |
How did you hear about Cleft Advocate? | I really don't remember (short term memory not that good) |
Name | Mary |
MJMouw@uic.edu | |
Homepage | |
State or Country | Illinois |
Comments | Thanks so much for putting this together, it's wonderful! |
How did you hear about Cleft Advocate? | Cleft Club |
Name | Paula |
plinkyplnk | |
Homepage | |
State or Country | Texas |
Comments | Thanks for all of the insurance information. Will let you know how our battle turns out! |
How did you hear about Cleft Advocate? | orthagnathicsupport@yahoo.com |
Name | Kari |
KKvidera@centurytel.net | |
Homepage | |
State or Country | Wisconsin |
Comments | Thanks for ALL the great Info!!!!! |
How did you hear about Cleft Advocate? | Cleft Kids |
Name | NEELANSHU S. JAMUAR & RUPALI JAMUAR |
nsjamuar@yahoo.com | |
Homepage | |
State or Country | INDIA/HONGKONG |
Comments | Thanks a lot for the wondeful site. It provides a lot of information and immense moral support. Thanks again. |
How did you hear about Cleft Advocate? | link in cleft.net |
Name | marchelle scott |
morocnrol@hotmail.com | |
Homepage | |
State or Country | nv. |
Comments | Great site!!! Hope it helps others to get good advice for all the difficult situations that can happen. |
How did you hear about Cleft Advocate? | deb oliver |
Name | Susan Beaudette |
zipnsqueeze@earthlink.net | |
Homepage | www.zip-n-squeeze.com |
State or Country | california |
Comments | Debbie, I think what you have created here is awesome! We all need to work together to make things better in life. Thank you for your support with my project (Zip-N-Squeeze products) which are designed to make eating and drinking a simple process not an overwhelming event both before and after surgery. You hav done a great service with this site! Susan Beaudette RN Zip-N-Squeeze Products |
How did you hear about Cleft Advocate? | Debbie Oliver |
Name | Kristen Norment |
Kris0983@yahoo.com | |
Homepage | |
State or Country | Texas |
Comments | I have only been following your story for a little over 2 months. I am grateful for people like you that take the time to educate others about defects such as these. I envy Erin's strength and constant happiness and wish her much luck in the future with the rest of her surgeries. Thanks for everything, you two. |
Name | Milo Stoddard |
milo1@ptd.net | |
Homepage | Yahoo |
State or Country | PA |
Comments | Read the Feature of the Month on William Thomas. My wife and I both enjoyed it. |
Name | Annalise Schoeman |
aschoeman@anglogold.com | |
Homepage | |
State or Country | South Africa |
Comments | Good day Deb Thanx a lot for a excellent site !!! My son was born with a biliteral cleft palate. He is now 5. He just started school. So ..... the teasing started. I got a lot of inspirational thoughts from your site and tried to apply it in my own situation - guess what - it worked. One of my collegues also has a child with a cleft, after talking to her today, she experienced the same with her little boy and I have been able to give her some advise and also to tell her about your website and the Chat Club. It really meant a lot to me, the only thing which is bothering me is, that that South African parents are too "scared" to discuss it. I am sure that the more parents I can involve in locking onto your site will help a lot !!!!!! In the beginning (first few months) there was absolutely no support and I really can associate with the other mothers going through the same. MJ and his "school buddy's" are more at ease now since I followed your advise on going to the school and talking to the kids - I must add the teacher nearly fainted, becuase over here parents just don't do such things !!!! Thank you very much for all the good advise. I am sure to pass this website on to all other cleft parents I am aware of. Keep up the good work, remember, you can go to sleep tonight and KNOW that YOU and YOUR efforts has made a difference in a Child's life. God Bless You. Regards Annalise |
Name | Marie Peterson |
MBOPtrsn@msn.com | |
Homepage | drewspageut.tripod.com/drewsexperience |
State or Country | Utah |
Comments | My son, Drew was born with a bilateral cleft lip and palate. He has had lip repair and soft palate repair! Now we get a break until he is about three years old! |
Name | cheryl ross |
luvsmiles3@shaw.ca | |
Homepage | |
State or Country | canada |
Comments | a lovely web site...lots of information...I am a mother with a unilateral cleft lip and palet with a son who also has the same thing... which I knew there was support out there like this earlier... Cheryl |
Name | Jeanne |
vjthibeault@aol.com | |
Homepage | |
State or Country | NH |
Comments | What a wonderful and informative site. Great Job to both Deb and Erin for all the hard work!!! Thank You!! |
Name | Pat |
pespinosa@revamps.com | |
Homepage | |
State or Country | Texas |
Comments | This is wonderful! As a little girl, I was discouraged from talking about my cleft. Web sites like these have helped me heal tremendously. Thanks! |
Name | Tina Smith |
tinasmith@bellsouth.net | |
Homepage | |
State or Country | Alabama |
Comments | I am the mother of 4..Cayla 11, Ceara 10, Joshua 7, and Jake (unilateral repaired cleft lip and palate) who is 5. |
Name | sarah |
asiaboogie98@hotmail.com | |
Homepage | |
State or Country | OHIO |
Comments | Great site. Way to go Deb and Erin. |
Name | Melissa Valentine |
mvalentine@sierramilitary.com | |
Homepage | |
State or Country | Maryland |
Comments | This is a great site. People really need to be able to get information about Cleft's. It really helps! |
Name | Traci |
tmkimball@hotmail.com | |
Homepage | |
State or Country | Wisconsin |
Comments | Just started to check out your site. |
Name | Lendy McLeroy |
gem@mindspring.com | |
Homepage | |
State or Country | GA |
Comments | Thank you so much for this FABULOUSLY done site!!! Our 4-year-old son was born with a complete bilateral cleft lip & palate. So far he has had 5 surgeries (with the last two failing) & is now going through palatal expansion since his upper jaw collapsed. He is quite a little man. And on November 25, 2001, he prayed & accepted Christ as his Lord & Savior!!! Christ alone is our hope & salvation...our very life's breath (literally after the past couple of surgeries). (Jesse Luke is our little guy's name - meaning "The Lord exists as THE Great Physician, the Bright & Luminous One) Thank you again, Lendy |
Name | Theresa |
TSaylor2001@aol.com | |
Homepage | |
State or Country | Maryland |
Comments | Great sight full of great information! Thanks and keep up the great work! |
Name | Robin |
robinsi2000@yahoo.com | |
Homepage | |
State or Country | PA |
Comments | A great site and I am honored that Will's story is included. I hope it will help another parent going through what we went through. |
Name | Jessica |
Baby02Daisy@cs.com | |
Homepage | |
State or Country | Iowa |
Comments | You did a great job on this site! |
Name | Ana |
Fragarock21@cs.com | |
Homepage | |
State or Country | Florida |
Comments | Deb & Erin, You've done a great job! Thanks for sharing all your knowledge with us. Thanks! Keep up the great work! Ana |
Name | Cammie East |
ceast36532@yahoo.com | |
Homepage | |
State or Country | Alabama |
Comments | Neat site, Deb and Erin! I'm sure it will be helpful to many who are troubled, baffled and in search of help with these difficulties. |
Name | Cheryl Singer |
cheryls@westerncasework.com | |
Homepage | |
State or Country | Nevada |
Comments | I love it !!! |
Name | Tom |
appleptgj@yahoo.com | |
Homepage | |
State or Country | Michigan |
Comments | Great Site! :) |
Name | Debbie Oliver |
debbie@cleftadvocate.com | |
Homepage | www.cleftadvocate.com |
State or Country | Nevada |
Comments | Welcome to our new website! your comments and suggestions are appreciated! |