Shivraj Daware Becomes The First Indian Child to Receive Rs 16 Crore Life Saving Injection for Free

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

Spinal Muscular Atrophy is characterized by weakening of muscles which are used for movement. 

“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.

Shivraj was first taken to Hinduja hospital for treatment.

The news of the disorder and the cost of the treatment came as a big blow to parents Vishal Daware and Kiran. 

Doctors informed the parents that the injection (Zolgensma - a gene replacement therapy) manufactured by a US-based firm is what is needed for their son’s treatment. 

Vishal who comes from a middle income background knew that the cost of the injection was beyond his budget. He runs a photocopy shop in Nashik. 

Dr Ujani suggested the parents to buy a lottery brought out by US firm for conducting clinical trials through which they could get the injection for free if they were lucky. 

Things took a turn for the better on December 25, 2020 when Shivraj Daware’s name was selected in the draw. On January 19, 2021, Shivraj was administered the injection at the Hinduja Hospital.

Shivraj Daware is born on August 8, 2019 in Nashik Maharashtra. His upcoming birthday will certainly be special after he received the life saving injection according to his parents. Shivraj became the first ever child in India to receive the life saving injection worth Rs 16 crore from a US firm after a lucky draw.