In Memory of our Roham
Roham was a nine-month-old who was born healthy and brought joy to his parents as their first child. At the age of one month old, things started to change, and Roham began showing early symptoms of his illness. His chest started to make abnormal sounds, and within a few months, he could not move his arms and legs.
After visiting several specialists and undergoing painful genetic tests, it was confirmed that Roham has spinal muscular atrophy (SMA) type-1.
Spinraza is the only 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 started a fund to collect donation for medical treatment of Roham, but unfortunately, on April 30th, we lost Roham. Although our little Roham is not with us anymore, many other SMA children are in need of help. Child Foundation will spend all collected donation toward helping them
Help Save Roham's Life