In Memory of our Little Ali
Ali was a four-year-old boy whose life had been affected by spinal muscular atrophy (SMA) type-1. He was fighting to survive this terrible disease since he was one month old. Ali's brain was fully functional, and he could feel pain just like everyone else. He could see and hear but was unable to move his head, arms or legs and couldn’t communicate with his parents.
Ali deserved treatment and a right to live. His degenerative disease was fast moving, and with every critical minute, Ali moved closer to losing this battle with SMA. Child Foundation's goal was to raise funds so that Ali could get the treatment he deserved as soon as possible, but on May 1st, 2018 his little body gave up after four years of fighting, and we lost him.
Spinraza is the only FDA approved drug used in treating SMA with promising results in helping to regain muscle movement in patients. Marketed and manufactured by Biogen, it is the century’s most expensive medicine, costing $750,000 for a year. The treatment comprises of six injections to the spinal marrow. Unfortunately, Biogen will not accept partial payments and the full $750,000 must be paid in full. Hospital admission must also be obtained where the injections can be administered.
Child Foundation is not collecting donation for Ali anymore, but we will spend any accumulated contribution toward other children with SMA.