I know when he is happy, because he opens his mouth and laughs out loud. Despite what many of us are told, these children are bright, intelligent fully functioning human beings who happen not to have the ability to communicate via facial expression. They usually need speech therapy to help them approximate sounds made with the lips, such as B,P,F,V,M, and W. They work very hard to overcome the weak muscle tone they are born with. And, from the day they learn to walk, they run. I found 80 others throughout the US and Canada.
More mothers call or write every week.
Lori has a 4year old daughter with Moebius Syndrome. Actually, there are seven children and one adult here in the Los Angeles area with Moebius Syndrome. Networking with others affected by Moebius Syndrome is vitally important to those who have children with Moebius Syndrome and adults with the syndrome. The ability to share information, ask questions, and get suggestions on how to deal with crossed eyes, choking, drooling and cruel comments from unknowing strangers are imperative to a parent trying to cope with Moebius Syndrome. The most important gift we can give our children is that of love, self confidence and a strong self image.