Toddler With Rare Genetic Disorder Gets ₹16 Crore Injection Free From US Firm

Shivraj Daware is suffering from Spinal Muscular Atrophy (SMA), a rare genetic disorder.

The upcoming second birthday of Shivraj Daware, who is from Nashik in Maharashtra, will be very special for his parents who claimed that the toddler, suffering from a rare genetic disorder, had become the first such patient from India who was given a Rs 16 crore life-saving injection by a US firm for free after winning a lucky draw. Shivraj Daware is suffering from Spinal Muscular Atrophy (SMA), a rare genetic disorder. The injection (Zolgensma - a gene replacement therapy) manufactured by a US-based firm is the most effective drug for such patients, according to doctors. For Shivraj's father Vishal Daware and mother Kiran, who comes from a middle-class background, the news of the rare disorder and the huge cost of injection came as a double whammy, but they didn't lose hope. After the initial diagnosis, Shivraj was referred for treatment to Hinduja Hospital in Mumbai where neurologist Dr Brajesh Udani suggested that Zolgensma injection was the drug of choice to save Shivraj's life, Vishal Daware recalled while speaking to PTI.