The upcoming second birthday of Shivraj Daware, who hails from Nashik in Maharashtra, will be very special for his parents who claimed that the toddler, suffering from a rare genetic disorder, has become the first such patient from India to be given a Rs 16 crore life-saving injection by a US firm for free after winning a lucky draw.
Shivraj, born on August 8, 2019, is suffering from Spinal Muscular Atrophy (SMA), a rare genetic disorder. The injection (Zolgensma – a gene replacement therapy) manufactured by a US-based company is the most effective drug for such patients, according to doctors.
For Shivraj’s father Vishal Daware and mother Kiran, who come 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 could save Shivraj’s life, Vishal Daware recalled while speaking to PTI.
But, arranging the huge amount was impossible for Shivraj’s father, who runs a photocopy shop in Nashik.
Dr Udani then suggested the family apply for a lottery to be brought out by the US-based firm for conducting clinical trials, through which the family could get the injection for free if lucky, the child’s father said.
On December 25, 2020, Shivraj was selected by the company in the lucky draw to get the injection. On January 19, 2021, he was administered the injection at the Hinduja Hospital.
“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 who treated Shivraj earlier.
Unlike Shivraj, one-year-old Vedika Shinde, a Pune resident who was also suffering from SMA Type 1, wasn’t lucky. She died on Sunday evening, nearly two months after taking the same injection.