Power of humanity: World raises Rs.18-Cr to save child from rare disease
Upping the ante to humanity, Rs. 18 crore was raised in Kerala through crowd-funding in seven days for an 18-month-old child suffering from a rare genetic disorder called spinal muscular atrophy.
The state witnessed a record fundraising drive, in which Rs 18 crore was raised within hours of a local television channel putting out the story of a one and half-year-old boy, who needed an injection that cost as much to survive. The boy, named Muhammed, is suffering from the rare disease of spinal muscular atrophy, in which muscles disintegrate progressively causing unbearable pain.
His elder sister Afra is suffering from the same ailment and it was her wish to see her brother saved from her own unbearable pain that moved the collective conscience of Kerala. The injection of the medicine named zolgensma, which is the cure for the disease, costs Rs 18 crore for a single dose and has to be imported from the US. Muhammed's parents, Rafique and Mariam of Kannur, were desperate to save his life, but even if they sold their entire assets, they would not be able to raise even one-hundredth of the required amount.