I'm fundraising on behalf of Boston Children's Hospital because I BELIEVE that by investing in the best doctors and scientists we can save lives - today! I also BELIEVE that donations received before today have helped a child we love.
Our son, Jack was born a healthy baby with an uncomplicated pregnacy on October 14, 2015. His first three months at home with his dad, his two big sisters and me were beautiful. A seemingly healthy baby born into a healthy family.
It was at three and a half months of age that Jack was evaluated in the ER of Boston Childrens Hospital because he had developed nystagmus (a fluttering of his eyes) and a noticeable decrease in muscle tone for his age.
After an extensive work up, Jack was diagnosed at 18 months of age with a rare disorder called Pelizaeus-Merzbacher disease (PMD). The disease is one of a group of genetic disorders called Leukodystrophy. Because of abnormalities affecting the white matter in the brain and spinal cord, PMD affects the central nervous system to variable degrees giving a wide variety of symptoms. It is a degeneratively progressive disease that leaves only room for treatment of symptoms.
Jack is strong and has been through more than most adults we know, but it is with the exceptional care at Boston Childrens Hospital and the groundbreaking research being done that will help him become even stronger.
Please consider a donation to support my fundraising efforts.