This is my daughter, Ella, who is now 12. When she was born I had NO idea what kind of journey we were on. My feelings went anywhere from guilt to this is the most beautiful face on Earth. Where do we start? Who do we see? How do I feed her? We found cleftadvocate 12 years ago. And here I thought we were alone! Nope! So much love and support 24/7 from people and families. We just needed to know that it would be ok. From surgeries, self esteem, therapies, pictures, insurance information, how to turn a palate expander key (that's where we are right now!) , what in the WORLD can I put in the blender while my child is on her third liquid/soft diet for 8-12 weeks and a place where I can go where people just understand. It's not a 1 and done surgery, as much as we all would love that. They become your support, your family for a long LONG time. I honestly don't know what I would have done without this organization. Organization doesn't seem like the right word. They are friends and family. Though most of us have never met, we all know the faces, stories and struggles. Here I was scared to feed my baby girl because I had no idea what I was doing. Now? Just an average GORGEOUS preteen who I can't keep off electronics and hear all about crushes on boys. I'm thankful for cleftadvocate and Ameriface every....single..day!! Guess what? We are not alone and it's going to be ok!
My name is Kerri and I am the mother to an amazing daughter named Ella. Ella is now 8 and healing from a bone graft surgery which is her third surgery this year alone. She was born with a unilateral cleft lip and palate. She was our surprise in the delivery room because it was undected through an ultrasound. So many questions, concerns and feelings. I had no idea where to turn or who to talk to. I stumbled across cleftadvocate/Ameriface thankfully! My emotions were everywhere and I had no idea where to begin, what to expect and needed to know there were others out there like her. I needed information and parents. I needed someone to tell me that it was going to be alright. That my daughter was alright. I needed before and after pictures. I needed someone to explain to me what was going on and what was going to happen in non-medical terms. Someone that has been there and done that. Ameriface has been that place. Whether it's to share experiences, pictures, give advice for pre op and post op, stories, help with a team, insurance, a shoulder to cry on, or just to brag about how awesome our kids are..They have been there with open arms. Our children go through surgery after surgery. Procedure after procedure. Therapy appointment after therapy appointment. We know how another parent is feeling without even speaking a word. It's been such an amazing experience and I am so thankful to be a part of it all!
Hello my son Amir was born with bilateral Cleft lip and palate. When we first found out, I was 8 months pregnant. I was confused asking why?... When we got introduced to this wonderful organization we felt welcome at ease made us understand what was going on with our son. Group of Dr's and nurses are phenomenal!!!! Outstanding medical staff make u feel at home. Keep on doing what u all are doing excellent work. Thank you Broomi Family
They truly are a wonderful group of people. They are not only there with information when you need it, but they are there to encourage you and help you in any and all ways possible. Without Debbie and all she has done for our family, we wouldn't be where we our today. We are greatful for everything AmeriFace has helped us with. Truly great people and organization.
I was born with a unilateral cleft lip and palate. I remember going to these sad picnics for parents and children with "facial differences" I say sad because no one was happy and all the parents would introduce their kids as this is my son or daughter with the cleft I don't remember anyone caring about what my name was just what kind of cleft I had, what surgery was I on did I have "the palate" also.
11 years ago I had boy/ girl twins, one had a bilateral cleft lip and palate. I knew since my pregnancy (16 weeks) but I think I'm a procrastinator or I'm one of those who thinks I don't have to deal with things till they come. So I didn't do much research or look for much support actually didn't even know that there was support out there and I sure didn't want to contact those "sad" groups.
My twins were able 1 month old and I was sitting in front of the tv while pumping milk watching the montel Williams show. It struk my interest when I heard something about cleft lip and palate so I stayed tuned. That's where, for the first time I heard about the wonderful Debbie Oliver and her amazing cause and she was in VEGAS!!! I immediately got on line and found cleft Advocate. We attended our first conference about 3 years later which was so wonderful to meet some of the people I been been getting know, helping and getting help from. I had actually met a young couple in person who just had their new baby girl and wanted to meet us in person who I had met in cleft Advocate.
This network has been so amazing all these years for me to be able to get help and get answers to things I never knew about it had gone through.
This week my family was blessed and able to attend this year's 25th annual conference! My twins are now 11, they have a younger brother who's 8 and a new baby sister. Being able to come this year has been amazing and so different to be in such a different place in our lives. What brought me the most joy was to see my son happy again and have that big smile on his face. He knew that he was just like other kids, he wasn't alone in this world and he wasn't my "cleft kid" he was himself and he is beautiful and perfect!
The conference is a huge plus to be able to make once in your lifetime is a huge plus but the heart and soul purpose of this network is the friendships, the support, the love and sense of family and others who "get it" then being able to help others to be out in the community and to be able to share what we got is priceless.
I'm so grateful that I saw that montel Williams show and learned about Debbie and her organization all those years back! What a blessing it has been.
I expected going to this conference to get information on having a cleft lip and palate. What I came out with was knowing what to expect in the long run what our son will be going through. It was very eye opening for my husband and I. We also met new friends young and older. I love how the speakers used words that were easy to understand and we're able to answer our questions. I was expecting more people to attend. I'm glad it was a smaller amoubt if people after all. We were all able to connect with one another on a more personal level. My kids all met great friends. This was the first time being outside of a medical facility that we were able to interact with othet cleft lip/ palate kidd and adults. We cant wait to go back and attend next year.
Amazing group of people who provided support, guidance, and insight that was much appreciated.
The information found on the ameriFace/CleftAdvocate website, Facebook page, via its members, and by Debbie Oliver was paramount in helping us get insurance coverage for our daughter's most recent surgery. Not only were we welcomed with open arms, but we were overwhelmed by the vast amount of knowledge, support, and genuine care and concern offered. Thanks for such an amazing resource for families with children with facial differences. We couldn't have done it without you.
I cannot even remember how I came to know about AmeriFace, but from the moment I did- I loved it. Debbie Oliver is one of the most gracious, kind-hearted, intelligent women I've gotten the opportunity to know. AmeriFace provides so much information and clarity when it comes to the knowledge of Cleft Lip/Palate's and other Craniofacial deformities. The level of professionalism and care goes hand and hand. It truly is like a community, and they will make sure you are informed and comfortable. There is a plethora of information and resources you can find, just by visiting the AmeriFace website. It is an awesome organization, and I just wish more people were informed about it!
My family has always found comfort from the many people at Amerface. We have also been a part of helping others throughout the years and now my son is picking up and helping others.
Ameriface has been with my family since my son was a year old. They have been with us for good and the bad. I have also been able to help others due to this organization. I have become friends with many of the families and we have been able to watch our kids grow and become happy healthy teens.
Looking for an organization or community event that my daughter and her friends can help in with other children their age who have disabilities. IF anyone knows of any please let me know. Thanks. firstname.lastname@example.org
I've been a client, parent advocate and volunteer for 12.5 years, since the beginning when Cleft Advocate first formed. Debbie had just begun forming the organization, and I've been served as a parent of a child with a craniofacial difference and I've been a volunteer.
I would do it again in a heartbeat if I had to. This organization has done so much over the years. Hope it keeps on ticking for the next 12 yrs and more more to come.
Have been part of this group since 2002 when our son was born. Wouldn't trade it for the world. AmeriFace and it's programs are an absolute great resource for families and individuals with craniofacial differences. Always glad to participate when I'm able.
I ended up volunteering with AmeriFace because I fell in love with the people. I can't imagine going though my son's childhood without their support. cleftAdvocate was brand spanking new when I first stumbled on them, and they were a lifeline, a source of comfort, and a place of sanity. I honestly don't know what I would have done without them and am so glad I found them when my son was only a few months old. 12 years later, I love them just as much and I can't imagine my life without them.
I have been a member of this wonderful network of the most loving, caring, giving people for almost 10 years. I have to say that I couldn't have gone through some of the stuff I am reliving with my son without their loving support. When I first chatted with the founder on the phone it was amazing so touching to have an understanding person there to listen to me. I cannot say enough wonderful things about cA I love this community so much.
I have been with this organization for about 8 years. It's got me eally tough times, celebrated good times and supported me through the whole roller coster. I will forever be greatful to have been given the privilage to meet so many of the families in person and to have gained lifelong friends. I constantly refer many to this network of friends for support, love questions. hope to meet some of you reading this real soon!
A. Kakiuchi (unilateral cleft lip) a proud mom to 8 yr old twins and a 5 yr old singleton (son born with a bilateral cleft lip and palate)
The cleftAdvocate Facebook page is an amazing resource for parents/families in the cleft community. I have never seen such a supportive group of people who are all so eager to give advise, share testimonies, and celebrate progress as this group is. As a young adult with a cleft, I'm aware that one day I might have a child with a cleft myself, and it is very encouraging to see these resources out there!
The sense of community that they bring to the families affected by Cleft, is invaluable. There can't be enough education for the public and families outside of just the medical perspective.
When our son was born with a cleft lip and cleft palate we didn't know what that meant, so beyond the shock of this when he was born, we started our research almost 9 years ago when the internet was just blooming. No wi-fi, all dial in, and we found AmeriFace and Cleft Advocate. They mailed us literature, and at that time a VCR tape, insert smiley, and talked with me on the phone to educate me on what a cleft was and what we needed to do.
Here we are 9 years later with a healthy active baseball player, four surgeries post, and very blessed to have organizations like this. I have referred many families to them, and support them financially when we can.
I found CleftAdvocate shortly after my daughter was born 11 years ago with a cleft palate. I didn't know what to do or where to turn to for help. They were truly a beacon of light shining through the darkness of my despair when we just couldn't figure out how to feed our baby. The information and support I received from CleftAdvocate were life changing for me, my daughter and our whole family. I can't thank them enough and only hope that my story can help someone else as much as CleftAdvocate helped me.
When your family recieves a cleft diagnosis, it can be overwhelming-at least it was for us. Finding reliable information is a godsend as we soon learn that cleft, though challenging, is navigatable. We watched the cleft feeding video over and over before our little one was born so we would have the confidence to feed her. Aside from needed support in the early stages this organization helps you as your child grows. Often kids need dental, speech, hearing and psychosocial support, not to mention help with health insurance. Ameriface helped me know what questions to ask doctors. Through the group, I have met adults with cleft. It is an awesome organization that makes a difference.
8 1/2 years ago I was blesses with a handsome little guy. He was born with a bilateral complete cleft lip and palate. I had no clue what to expect. I was offered great support and advice that I now share. Then in 2011 my oldest was diagnosed with Chiari 1 Malformation. Again, huge support :) very blessed to have had the great help I have received. Thank you!!
I am an adult with Goldenhar Syndrome. There were no groups to share information, understanding or compassion and empathy. We - my family and I were so very alone. because of the AMAZING work of this organization no one with a facial difference ever needs to feel alone again. For me, this is everything! I also have an amazing son who has a cleft lip and palate - this groups has excellent and well vetted informations!