Alyssa Richardson via Crowdrise
October 09, 2012
BENEFITING: RETT SYNDROME ASSN OF MASSACHUSETTS
ORGANIZER: RETT SYNDROME ASSN OF MASSACHUSETTS
EVENT: 2013 Boston Marathon
Over a year ago I was lucky enough to meet Caroline, a beautiful 12 year old girl who was diagnosed with Rett Syndrome at age 2. She put me through the ringer the first week I worked with her and now I know she was just making sure I would be there for her no matter what. Fortunately, I passed her test and we have been best friends ever since.
Caroline is unable to speak or purposefully use her hands. She faces challenges every single day. She communicates as best she can with her eyes, clicks with her tongue, her contagious laugh, and sometimes tears. Caroline is overall a very happy girl who loves to be outside whether it is going for a run in her stroller, swinging on her swing, or a ride on the boat. She lives a full life with her amazing family and continues to impress us all daily. Caroline gives me perspective every day and I cannot help but be in a good mood when I am with her.
I am so excited for this opportunity to run the Boston Marathon and raise money for Team Rett to help Caroline and other girls like her. Over the last few years there has been amazing progress as a result of extensive research and clinical trials. The funds raised by Team Rett will be a major contributing factor for continued research and hopefully many more advances. Please help me reach my goal of $5,000 so I can accomplish this amazing challenge dedicated to my best friend. Caroline, these 26.2 are for you!
RETT SYNDROME ASSN OF MASSACHUSETTS wrote -
Team Rett FundRacers will be raising money for research in hopes that Rett syndrome can be reversed!
Seen almost exclusively in girls, Rett syndrome is a unique developmental disorder caused by mutations on the X chromosome on a gene called MECP2. A rare disease, the incidence of Rett syndrome is about 1 in 10,000 females. The course of Rett syndrome, including the age of onset and severity varies from child to child. As the syndrome progresses, most children lose purposeful use of their hands and the ability to speak. Other symptoms may include loss of motor skills, breathing and cardiac irregularities, seizures, digestive problems, scoliosis, and tremors.
Although Rett syndrome leaves all girls and women dependent on others for all of their basic needs, tremendous advances in research have been made since the MECP2 mutation was discovered in 1999.
Please support Team Rett in its efforts to fund research that may lead to a cure for Rett syndrome!