Many of you may not know of a genetic disorder, Spinal Muscular Atrophy. It's the leading genetic cause of infant death. Most children with the disorder die before their second birthday. That's why we don't see many SMA children in school like we do children with Muscular Dystrophy. My grandson is 7 and has SMA Type 2. He has a sharp intellect and a sparkling spirit. His body is 95% disabled. His parents take excellent care of his many needs like breathing, nourishment and movement. He has 3 younger siblings who do not have the disorder.
As part of ongoing treatment related to his condition he will soon need spinal surgery to support his body. We are confident of the excellent care he will receive at Boston Children's Hospital but we are concerned about the transportation from New Hampshire to Boston. The familys' 8 year old van has 110,500 miles on it. The family finances are inadequate to suffiently repair it to a safe standard. With out safe, reliable transportation the surgery will be in question.
The fund raiser is divided into 3 parts. The first is to fix the van, $2,500. Next is to pay down the loan, $18,500. And then to help purchase a newer van, $18,000.
Everyday we hope for a cure for SMA. Until that time each day is a life and death challenge and a gift. A safe, reliable form of transportation is vital for continued support and services. I hope you will be generous and contribute to our effort. Thank you!