BENEFITING: RETT SYNDROME ASSN OF MASSACHUSETTS
I am running the 2013 Boston Marathon to raise funds for RSAM, the Rett Syndrome Association of Massachusetts. Money raised will support efforts to find effective treatments for Rett Syndrome, the devastating disorder that predominantly affects girls, including my daughter Samantha.
My daughter Samantha came into the world as a beautiful and sweet-natured little girl who seemed to do everything well. From her first smile, Sam has always been able to light up a room and her laughter is frequent and infectious. When Sam was about 6 months old, she was sitting independently and babbling nonstop. By 9 months, even though she was using her fingers to pick up food and feed herself, we noticed that she wasn't 'motivated' to move towards things very often unless she was really interested. As time went on, the breakthrough from babbling to talking, which seemed imminent, never happened. As time went on, she lost the ability to roll towards items, lost the ability to pick up food off her tray, lost the ability to play with her toys in even the most rudimentary ways.
Despite all this, Sam remains one of the happiest and patient souls on the planet. She loves her family, loves watching her little sister, and loves going to go to school where she gets to see her friends. She loves jokes, laughing, bad '80's music videos, and knows that burps are funny. She loves driving fast, four wheelin', and bumpy rides. She loves books, eating big meals, watching Elmo, and cuddling with her family. Now that she has her computer system, she is starting to learn how to communicate her world to the rest of us. There is so much within her that is just waiting to come out!
Sam needs your help to unlock her from this disease. There have been some amazing advances in the science behind Rett sydrome. There are some promising treatments that are available TODAY, with more on the way. By supporting the Boston Rett team, you can contribute directly to our search for a cure, directly to the IGF-1 clinical trial being held at Children's Hospital. Sam was one of ten girls who participated in phase I of the trial, and recently completed phase II. Sam did well throughout phase II of the trial, and spoke her first sentence at the end of the treatment period!
Your donations will fund the completion of the trial and allow the enrollment of more girls tinto the study, giving them the chance at this promising therapy. Because of the scientific progress and the donors who support this cause so generously, we have real hope that Sam will one day be able to walk and talk and have a richer, fuller life.
I am running so that maybe someday she will be able to!