Toddler suffering from genetic disorder receives life-saving injection for free
What's the story
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, had become the first such patient from India who was given a Rs. 16 crore life-saving injection by a US firm for free. They received the injection after winning a lucky draw.
Rare disorder
Shivraj is suffering from Spinal Muscular Atrophy
Shivraj 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, the news of the rare disorder and huge cost of injection came as a double whammy, but they didn't lose hope.
Treatment
Shivraj's father runs photocopy shop and couldn't arrange the amount
"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 recalled while speaking to PTI. Arranging the huge amount was impossible for Shivraj's father who runs a photocopy shop in Nashik.
Lucky draw
Dr. Udani suggested the family to apply for the lottery
"However, Dr. Udani suggested the family apply for a lottery to be brought out by the US-based firm for conducting the clinical trials through which the family can get the injection for free if lucky," Vishal said. On December 25, 2020, Shivraj was selected by the company in the lucky draw to get the injection.
Disorder
One out of 10,000 children gets affected by SMA: Doctor
On January 19, 2021, Shivraj 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 the muscles stop working. Later, it leads to the death of the child," said Dr. Ramant Patil who had treated Shivraj earlier.
Information
A one-year-old toddler from Pune died of the disorder
Unlike Shivraj, one-year-old Vedika Shinde, a resident of Pune who was also suffering from SMA Type 1, wasn't lucky. She died on Sunday evening, nearly two months after taking the same injection.