Nashik Baby Boy Born With Rare Genetic Disorder Wins Life Saving Injection Worth Rs 16 Crore In Lucky Draw

Shivraj Daware's second birthday will be a special one as he reportedly became the first-ever child in India to receive a free life-saving injection worth Rs 16 crore from a US firm after winning a lucky draw. Daware suffers from a rare genetic disorder known as Spinal Muscular Atrophy (SMA).

He was born on August 8, 2019, in Nashik, Maharashtra. He is suffering from Spinal Muscular Atrophy (SMA), a rare genetic disorder.

Lokmat

According to doctors, the most effective treatment for patients suffering from this disorder is an injection (Zolgensma - gene replacement therapy).

However, due to the obscenely high price of the drug, Shivraj's middle-class parents, Vishal and Kiran couldn't afford it. But they did not lose hope.

Vishal told PTI that Shivraj was referred to Mumbai-based Hinduja Hospital for treatment where neurologist Dr Brajesh Udani suggested a Zolgensma injection could save his son¡¯s life.

Learning about the family's financial state, Dr Udani suggested they enter a lottery to be held by the US-based firm in order to conduct clinical trials. If it works out, the family will get the injection free of cost.

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During a lucky draw conducted by the company on December 25, 2020, Shivraj was selected by the company to receive the injection.

He got the injection at Hinduja Hospital on January 19, 2021.

BBC

¡°SMA 1 is a genetic disorder. One out of 10,000 children gets affected by the disorder. It slows down the movement of the child and muscles stop working. Later, it leads to the death of the child," said Dr Ramant Patil, the doctor who treated Shivraj in the past.