Shivraj Daware from Nashik, Maharashtra has been suffering from a rare genetic disorder called Spinal Muscular Atrophy since birth. The treatment for the disorder is very expensive especially for Vishal Daware and Kiran, who come to form middle-class Indian families.
Daware's family was excited to know that their son will be receiving the ₹16-crore injection Zolgensma after winning the lucky draw from the US manufacturer. On the recommendation of Dr. Udani from Hinduja Hospital, the Daware family applied for the lottery.
"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.
This injection has been proven to be the most effective treatment of SMA Type 1 yet.
Spinal muscular atrophy is an extremely rare genetic disorder of the central nervous system and skeletal movement that causes loss of nerve cells in the spine due to deficiency of survival of motor neuron protein.
Shivraj Daware was born on August 8, 2019. On December 25, 2020, he was selected to be the lucky winner of the lucky draw to get the injection with ₹16-crore. January 19, 2021, he was administered with the injections and has been kept under observation by doctors.
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