According to sources, on 14th May 2024, a 22-month-old, Hridyansh Sharma, diagnosed with spinal muscular atrophy (SMA) type 2, received a Zolgensma injection. This rare one-time gene therapy drug saved his life at J K Lon Hospital, Jaipur.
This rare drug, manufactured by a Swiss Pharma company called Novartis, treats the rare genetic disorder SMA. It is deemed the world’s most expensive Injection, costing around Rs.17.5 crore in India.
The father, Naresh Sharma, a subinspector in the Rajasthan police force and currently posted as a station house officer in Dholpur, started a campaign to raise funds for his son’s treatment in March.
The crowdfunding campaign gained traction as the state police force joined to help. Donations started flowing in from all sectors of society, with cricketers like Deepak Chahar and actor Sonu Sood promoting the cause.
According to reports, the family received Rs. 9 crores within three months through crowdfunding. While the campaign was growing stronger by the day, the Injection had to be given before the baby’s second birthday. With limited time, the Family informed the drug manufacturing firm about the situation, requesting an alternative option, to which the firm obliged. With custom duty waived off by the center, the drug was delivered from the United States of America to Jaipur, India for Rs 9 crores and permission to make the due payments over three installments.
The baby, hailing from Masari Village, Alwar district, showed a regular growth pattern until six months, after which he was unable to stand up. That is when the doctors diagnosed the baby with the rare genetic disorder, SMA.
(Input from various sources)
(Rehash/Dr. Yogeeta V H/MSM)