We love hearing from other family of children living with Rett syndrome. We have never met another family that has a daughter with her same mutation. Marebear's Mutation is P152R.
Our life may be difficult, but we know our daughter is Living with Rett syndrome, and she is a determined little girl. She suffers from Seizure, and has a feeding tube. Her foot has dystonia and she had surgery this summer to correct it. She is in a wheelchair, but is regaining her walking ability slowly. She is sweet, kind and loves life.
Check out this website to learn more about Rett Syndrome!
If you would like to donate to Marebear strollathon page in honor of Marebear to help International Rett Syndrome Foundation find a cure for Rett Syndrome Click Here.