Baby with Rare Disorder Wins Drug Worth 16 Crore

June 27,2021 07:15 PM


New Delhi [India], June 27 (HornbillTv): A one-year-old baby with a rare genetic disorder called spinal muscular atrophy won a 'miracle' drug worth Rs 16 crore through a lottery system on Saturday.

New Delhi [India], June 27 (HornbillTv): Spinal muscular atrophy is a rare neuromuscular disorder which causes muscle wasting due to loss of nerve cells and motor neurons which control muscle movement. The condition worsens with age. Its treatment requires gene therapy.

One-year-old Zainab's parents tried to raise funds to get a single dose of the required drug Zolgensma. This medicine costs Rs 16 crore. The reason Zolgensma is so expensive is that it is a specialised drug used to treat a rare disorder. The research put into it has also contributed to the high cost.     

Not too long ago, Zainab's father Abdullah came across the case of a baby who survived the disorder after being administered Zolgensma. At that time, he registered his baby's name with Cure SMA, an organisation working for children who require treatment for SMA.

Abdullah and his wife Ayisha even reached out to the Prime Minister's Office and other top officials in their desperate attempt to save their daughter's life. The couple had lost their first child to SMA in 2018.

Then, on Saturday, Abdullah received a phone call and was informed that his daughter had won the required drug through a lucky draw. Three other children too had the same good fate.

On Saturday itself, the drug Zolgensma was infused. The drug was administered within 45 minutes at Sri Ganga Ram Hospital in New Delhi on Saturday afternoon.    

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