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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.
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http://www.rettsyndrome.org/
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.