Do you know about Rett Syndrome???

Question

http://www.rettsyndrome.org

Answer 1

Yes, my 3 year old daughter has it. It is the worst thing that could ever happen to your child. One day she is normal, and the next she can't talk, stops crawling, won't make eye contact, has seizures, can't take in enough calories to maintain a healthy weight, etc. But a few weeks ago researchers reversed RS in mice...a "cure" or treatment is not far off. There is also info here: www.rsrf.org.

Thanks for posting and raising awareness about this horrible condition.

Answer 2

It's pretty rare, occurs almost exclusively in girls, has a strong familial inheritance pattern. Affected girls are apparently normal at birth, but gradually develop bizarre bodily positions and behaviors. I think it is now listed in the autistic spectrum disorder category.