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!
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 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.
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 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)
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.
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!
I have felt so fortunate to have such wonderful people that I could get support from and ask questions .If not for this group I do not know what I would have done because there is no one in my area that could have given me the support and advice that I have recived I feel very bless to have come across this group
I love this organization! Great to the families and children. My family is exrremely greatful. Thank you for all you do!
In 2002 my son Jayton was born with a bilateral cleft lip and palate. It was a complete surprise so we definitely were not prepared. We live in a small community so children being born with a cleft are few and far between, so with that said, our hospital was not prepared either. We were basically sent home with the Haberman bottle and a smile. Thank goodness I found cleft Advocate and Debbie Oliver. Without Debbie and her passion to create such a wonderful organization I would not be where I am today. I am a strong mom and have an even stronger son due to her knowledge, & the connection with other families. Being able to jump online and ask a question and receive a handful of responses was a god send. I APPRECIATE and VALUE the support of cleft Advocate and AmeriFace.
In October of 2001, my son was born with a cleft lip and palate. I was a single mother and I was terrified. I stumbled across many organizations through the internet, but none that made feel as comfortable and welcome as AmeriFace. Debbie Oliver and the people I met through the network changed my life. They felt like family- and to this day, still do. I honestly don't think I could have made it through my son's early years without the advice, support, friendship, and love of this group. Every question I had about my son's care was answered from someone who had been there. And now, I am one of the "old timers" and I get to help others! Amazing!
To start Ameriface has been awesome to our family. I love Debbie Oliver and everyone who has touched our lives and helped us. In April 2007 my son was born with a unilateral cleft lip and palate. The nurses in the hospital didn't know how to feed him and I thought I would end up feeding him through a straw or cup. The nurses there put a tube in his nose to feed him. One of the nurses that came on remembered a packet that was dropped off at the hospital by this group and asked me if they could call them for me. I said "yes please do". If I wasn't able to get him to eat in the next 12 hours they were going to do a GI tube. I didn't want that to happen. A little later Debbie called me and asked if she could send another parent who had a son born with the same thing. I again said "please do". She sent Monica (my angel in disguise) and her son to see me and my son in the hospital. She then showed me how to feed him and gave me a packet with info. We talked about surgeries and what to expect. We are still friends and she has even taken us to one of my sons surgeries when my husband had to work. I love everyone that I have had the pleasure to meet through this organization. They are such a blessing.
In 2007, my son was born with a unilateral cleft lip and hole in his soft palate. There is no worse feeling that being told that there is a problem with your unborn fetus. You feel alone as if this has happened to noone else but you. Finding Ameriface was one of the best things I could have done. It brings a light that you may not have seen before, knowing that there are others like you going through the same thing. You suddenly feel like if they can get through it, so can you. This organization has not only helped me but it has helped me help others going through the same thing. There are so many resources that Ameriface has brought to my attention for my son, that I didn't even know existed. I am so incredibly thankful that is organization exists.
Great organization! Joined after a 20 week ultrasound should my son cleft in 2006. Now at 6 years old, we have developed life long connections and friends that I cherish. This groups has provided myself and family wonderful support and resources.
AmeriFace is wonderful and has been so beyond helpful to my family. The day my daughter was born we were so confused and had no idea what was going. We had no idea my daughter had a cleft palate till hours after she was born and Debbie came to our rescue with bottles and tons of information on clefts and the organization. She also provided us with a list of wonderful doctors. We are very thankful for AmeriFace and all that they do.
My Son has Crouzons Syndrome and Ameriface has been a tremendous help to our family. We have learned so much from the family conferences they put on in Vegas. How to deal with insurance to get needed medical help for our son, resources to help with costs, other families to network with and workshops geared to the age of each child, including those not affected in each family. My boys have made great friends at the conferences and look forward to them each year to reconnect. Because of Ameriface we have meet other families with the same rare conditon our son has that we would have never been able to meet otherwise. Our son has come a long way from the first conference...crying when we left him in his workshop to now helping other kids know where to go and when, dancing on the dance floor, performing in skits, playing in the pool and lounging pool side. All things normal/average kids do but things that were very hard for our son to do until becoming a part of the safe, loving, nuturing enviroment of Amerface. We just can't say enough about how much we love Ameriface and what we have gained from them.
Cleft Advocate was the first online support group we found when y grandson was born with a undetected complete bilateral cleft lip and palate. Four hours from home on a computer in the hotel lobby I found the site and our life changed. Without the support and information available on the list serve, we would have not known there were options for us, and we would never had had the opportunity to accomplish all that was accomplished for the good of my grandson.