I HAVE MOEBIUS SYNDROME

Hello,

I am a 34 year old female with Moebius. I am extremely happy to see this site. I grew up thinking I was the only person with this syndrome. This was not talked about much when I was growing up. My parents loved me and treated me just like my other sisters. The thing is though, I was not like my other sisters. There was a difference and it needed to be addressed. When I was growing up there were no web sites to turn to, and most doctors were clueless on the subject. It was very difficult being in the dark. I wasn't sure of my future.

Eventually I learned a little more about the possibilities of reconstructive surgery. I made up my mind to have the temporal sling surgery in the early 90"s, a decision I regret now. To make a long story short, life was very complicated and emotionally painful as a child. People can be cruel. But I must say, I have grown through the years and have accepted who I am. To all the parents of children with Moebius.. Just love your babies and show them that they are not "SPECIAL" (as in different). We are all different from each other. They are "special" because they are precious!

I would be happy to share my experiences as an adult with moebius. In a nut shell. Life goes on, and mine is wonderful. I have three wonderfully healthy teens a near perfect husband...Who could ask for more?

God bless you all
Teri