I am walking in the Strollathon, Rettsyndrome.org’s signature fundraising and awareness event, to raise money for essential research of effective treatments and to find a cure for Rett syndrome. This casual stroll has a fun and energetic festival atmosphere.
As most of you know, my daughter Azalea Marie was diagnosed with Rett Syndrome when she was 21 months old. It is my duty to advocate for her since she can’t. Rett syndrome is a rare genetic neurological disorder that occurs almost exclusively in girls and leads to severe impairments, affecting nearly every aspect of the child’s life: their ability to speak, walk, eat, and even breathe easily. The hallmark of Rett syndrome is near constant repetitive hand movements. Rett syndrome is usually recognized in children between 6 to 18 months as they begin to miss developmental milestones or lose abilities they had gained. Rett syndrome is caused by mutations on the X chromosome on a gene called MECP2. There are more than 900 different mutations found on the MECP2 gene. Most of these mutations are found in eight different “hot spots.” Rett syndrome is not a degenerative disorder with individuals living to middle age or beyond. It is not inherited. Rett syndrome occurs worldwide in 1 of every 10,000 female births, and is even rarer in boys. Rett syndrome can present with a wide range of disability ranging from mild to severe. The course and severity of Rett syndrome is determined by the location, type and severity of the mutation and X-inactivation. For my birthday this year, I'm asking for donations to Rettsyndrome.org. I've chosen this nonprofit because their mission means a lot to me, and I hope you'll consider contributing as a way to celebrate with me. Every little bit will help me reach my goal. I've included information about Rettsyndrome.org below. Azalea goes to preschool and has physical, occupational,speech, and vision therapy there. She also has therapy 3 days a week for Physical, occupational, and speech. She can’t walk on her own, or use her hands functionally. She uses an eye gaze machine to communicate since she cannot talk. She has a 20 degree curvature of her spine at this time (scoliosis), seizures, and has many other physical challenges. Azalea is a smart, funny, sassy 4year old girl that doesn’t deserve to be trapped in a body that she cannot control. Please help me raise awareness and funds to find a cure for these beautiful kids.
Your donation will help fund important research and family support. This cause is very important to me and I appreciate your help as we fight for a cure for Rett syndrome!
Please join me or donate to my efforts to support Rettsyndrome.org in finding a cure! Your help is our hope!