Baby with rare disease wins Rs 16 crore drug in lottery

New Delhi : A baby with a rare genetic disorder called spinal muscular atrophy has won a drug worth crores of rupees through lottery system. One-year-old Zainab was lucky enough to get this expensive drug this way. A single dose of Solgensma, a drug used to treat spinal muscular atrophy (SMA), costs Rs 16 crore.

Zainab's parents, Ayesha and Abdullah, were trying to raise money for their daughter's treatment. They could not afford the cost of a single dose of the drug in crores of rupees. The drug is so expensive because it is a rare disease that requires a large amount of research into the drug itself.

The turning point came when Abdullah was able to meet the father of a child who had recovered from SMA while trying to raise funds. According to him, Abdullah was able to contact CureSMA and register Zainab's name there. CureSMA assistance was provided to children with SMA status through a lottery.

Spinal muscular atrophy is a condition in which muscle damage is caused by the destruction of nerve cells and motor neurons. The condition worsens with age.

This condition is more common in children. Gene therapy is the only solution. Zolgensma is known as the most 'expensive' drug in the world. On Saturday, Abdullah received a message informing him that Zainab had access to the drug. On the same day, Zainab was given medicine from Sri Gangaram Hospital in Delhi. The other three children received the same opportunity from Cure SMA.

Abdullah had gone to the Prime Minister's Office and some other important institutions to seek help for his daughter's treatment. Their first child died in 2018 of the same condition.

Vanathi Sreenivasan, the former Tamil Nadu BJP secretary had requested PM Narendi to waive off the GST and import charges that form 35% of the drug's cost.