Rett Syndrome is the most physically disabling of the autism spectrum disorders, primarily affecting girls, and usually strikes by 18 months of age. It is caused by mutations on the X chromosome on a gene. As the cascade of Rett Symptoms descends, a child loses acquired skills, normal movement and speech, then begins the long regression that may leave her in a wheelchair, unable to communicate or use her hands. Extreme anxiety, Parkinson-like tremors, seizures and orthopedic problems are common.
Imagine having a beautiful, healthy daughter who is achieving all of the milestones for her age and then those milestones slowly disappear. She no longer plays with her favorite toy, she no longer runs around in the back yard the way she used to, and she can no longer tell you she loves you.
Eva is a precious, sweet little girl who has Rett Syndrome. We will be running in the Hambletonian Marathon in honor of Eva. All the training that we will do to prepare for this marathon pales in comparison to the struggles that our little friend Eva and other little girls with Rett Syndrome will go through every day. Please help us contribute in the much needed research for Rett Syndrome and find a cure.