Ryley, Rett Syndrome

“Hi! My name is Ryley. I have Rett Syndrome – an awful neurological disorder that messes up everything I try to do – and it mainly affects girls! I cannot talk, use my hands or move around very well, but I can hear you. I understand you. I am smart. There are hundreds of thousands of girls like me.”

Ryley is a happy fun loving beautiful little six year old girl! She developed normally until about 12-18 months when she was diagnosed with Rett Syndrome. Rett Syndrome is a debilitating neurological/movement disorder that primarily affect females. Rett Syndrome is the leading genetic cause of severe impairment in girls – most cannot speak, walk or use their hands. Rett Syndrome is as prevalent as ALS, Cystic Fibrosis and Huntington’s Disease. Sadly, another baby girl is born afflicted every 90 minutes. Rett Syndrome is caused by a single gene mutation that leads to underproduction of an important brain protein. Rett Syndrome is potentially reversible – research shows once protein levels are normalized, symptoms subside.

Children’s Miracle Network of NNY has helped Ryley and her family through our Direct Financial Assistance Program (DFAP). CMN has provided reimbursement for travel expenses incurred during her appointments with specialists/hospitalizations in New York City.

“I would like to say thank you to Samaritan and CMN for allowing us to share our story for the last year! Time sure flew by. We had so much fun meeting all the people and lending our help. CMN has helped us in raising awareness for Rett Syndrome as well as bringing awareness to our many friends. With Ryley being nominated as the Champion and her face being everywhere many people have supported us along our journey. CMN helped us travel to NYC for important doctors’ appointments and covered Ryley’s dental bills. It has meant the world to me to have our story told all over the North Country and bring a voice to my beautiful daughter’s journey! Thanks again for all the love and support!”

–The Weaver Family