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
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.
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!
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.
What An Amazing Organization That Not Only Help Parents Of Children With Clefts..They Help Children Themselves In Reassurance That We Are Not The Only One's Out Here Dealing With These Daily Issues&Struggles
We found cleft advocate ten years ago after our twenty week ultrasound showing our son would be born with a cleft lip and palate. This group of people were so welcoming , funny, supportive, encouraging and understanding. They continue to be the place we turn when we need advice, support or just understanding.
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!
Our adopted son came home when he was seven-days-old. Although many would say that his face was not "perfect," to us he was beautiful. Chris was born with a moderately severe clefting of the lip, gums and hard and soft palates, left side.
Ignorance is self-defeating. Chris was turned down by six other couples because they wanted a “perfect” baby, and in their ignorance, they passed up just that – the perfect – baby, our son.
Be that as it may, we were still concerned about being able to do all we could for our baby. Education was paramount, we knew that, but we needed more than education; we needed empowerment.
AmerFace accomplishes just that. As parents, we need more than step-by-step answers about lip closure on a baby, or getting your child to drink from a glass before palate closure; what do we do during those long months of healing from bone graft to keep our children comfortable and engaged when all they want to do is run and play? How do we handle bullying, speech therapies, self-image and what can we feed our children when they are not allowed solids for a stretch of time? What questions should I ask before each surgery?
Yes, I can get an education on line and at the library, but how do I educate my heart to help my child? Through AmeriFace and their FaceBook group CleftAdvocate. And that’s exactly what they help us to become: advocates for our children.
I joined this when my son was born in December 2010 with Bilateral complete cleft lip and palate (hard and soft). Their facebook page has helped me to prepare for all that I have had to go through. I love being able to ask questions AND share all our successes with them and how they all understand. I know I will be using them many times in the future.
I am new to the cleftAdvocate group on Facebook but as a new to cleft related issues mom, I am very grateful that this group exists. My September baby has a unilateral, incomplete cleft lip and we are facing our first consult next week. I'm anxious and nervous but I deal better with the unknown through research and education so I love having a place to get opinions and experiences from others who've been through what we are facing. I've already asked questions and others have been quick with support and comments and I've already felt some relief with learning. Even though when we tell people about our son's cleft lip, others will tell me "oh, so-and-so that I know had that" so it seems so common yet we know no one personally that's been through it so it can feel lonely at times. I think AmeriFace is doing a great job not just with the technical side of things in terms of diagnosis, correction, etc. but they are really taking care of the personal side of things too for the children as well as the parents and the family as a whole. It is a wonderful thing!