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.
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.
When my son was born with a cleft palate, I had no idea what to expect. CleftAdvocate was there to help guide me through the process. It was so reassuring to communicate with other parents who had "been there, done that". I believe in this organization so much that I became a Pathfinder Volunteer to help other parents with their journeys.