It was Dr Udani who then suggested they could apply for a lottery to be brought out by the US-based firm for conducting clinical trials, and Shivraj was fortunate to be selected in the lucky draw on December 25, 2020
Ahead of this second birthday, a toddler from Nashik in Maharashtra has got a ₹16 crore life-saving injection, the most expensive drug in history, for a rare genetic disorder from a company in the US free of cost.
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 the muscles stop working. Later, it leads to the death of the child.
Parents of Shivraj Daware said their son is the first patient of Spinal Muscular Atrophy (SMA) from India to get Zolgensma, a gene replacement therapy, through a lottery. Shivraj was referred to Mumbai’s Hinduja Hospital after the initial diagnosis.
Vishal Daware who runs a photocopy shop in Nashik, said that Hinduja Hospital neurologist Dr Brajesh Udani suggested Zolgensma could save his son’s life but arranging the huge amount was impossible for him.
It was Dr Udani who then suggested they could apply for a lottery to be brought out by the US-based firm for conducting clinical trials, and Shivraj was fortunate to be selected in the lucky draw on December 25, 2020, and was administered the injection at the Hinduja Hospital on January 19, 2021.
“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 the muscles stop working. Later, it leads to the death of the child,” Dr Ramant Patil, who treated Shivraj, said.