Discussion Forums
Wed, 02/03/2010 - 18:51
Hi Everyone-
First, I thought I would share a brief "What is Rett Syndrome?"
The short story is it is a random mutation on Chromosone 1, MECP2 Gene. It affects mostly girls although there are a few boys that are alive. It is estimated there are 20k in the United States and 350k worldwide. It is like putting Autism, Epilepsy, Parkinson's, Cerebral Palsy and anxiety disorders all in the same child. They are mute and are often referred to as "Silent Angels".
My daughter was diagnosed as A typical Rett Syndrome May 22, 2007. She is now 5 years old and in an inclusive school half days right now. She receives hippotherapy, physical therapy, speech therapy, occupational therapy along with regular classwork. She has scoliosis and kephosis and tomorrow we are off to Shriners in Salt Lake City to decide if we need to cast her... wish us luck.
I am happy to answer questions about Rett Syndrome. Nice to meet everyone.
