SMA: Coimbatore Kid Wins Lottery For Rs 16 Crore Drug

28 Jun, 2021 11:57 IST|Sakshi Post

One year old Jainab, who was suffering from killer muscular disorder, is now blessed with a new lease of life after she underwent gene therapy at Sir Ganga Ram hospital, Delhi after winning a 'lottery'. This rare disease - Spinal Muscular Atrophy (SMA)-caused by the loss of nerve cells, which carry electrical signals from the brain to muscles. By winning a lottery of Rs 16 crore through Cure SMA organisation, she was able to receive Zolgensma, a gene therapy treatment at Delhi hospital. Ayesha Firdoz and Abdullah, blessed with a baby girl, Jainab. In the beginning, the infant had weak muscle control and movements and the parents came to know that she was suffering from Spinal Muscular Atrophy. 

A single shot injection, Zolgensma could save her but it was the costliest medicine and was out of reach for the parents who belonged to lower middle class. The parents heard of Cure SMA and approached them. Four children are in need of Zolgensma and Jainab won it in the lottery process. The baby was given the injection, which is a one-shot cure for this rare disease. Doctors said that the baby's health is good and has to be under supervision for another four weeks. Incidentally, the couple had earlier lost a child, who was also suffering from SMA.

A few days ago, an Uttar Pradesh toddler who was suffering from SMA was given the drug. Zolgensma came from Novartis which is allocating up to 100 doses of the medicine free of charge through its global Managed Access Program. It was a lottery system. Till now, a total of 700 SMA patients across the world have given the drug.

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