crowdfunding raised Rs 17.5 crores to provide life-saving injections

Hriadayansh Sharma, the 23-month-old son of Rajasthan Police Sub-Inspector Naresh Sharma, is suffering from a rare genetic disorder called spinal muscular atrophy (SMA) which can only be treated with a single dose gene therapy injection called Zolegensma, costing approximately Rs. 17.5 crore, making it one of the world's most expensive drug, was crowdfunded by individuals ranging from a popular actor, a cricketer to a vegetable vendor.

The 22-month-old boy had nearly lost all bodily function below the waist before he was given the injection which would ensure he was able to lead a normal life. Since the injection can only be given until a kid is two years old, the Rajasthan Police started a crowdfunding effort for the youngster in February, when he was only twenty months old. The campaign had a stringent deadline.

Actor Sonu Sood and cricketer Deepak Chahar supported the initiative by posting pleas on social media, while individuals of all races contributed to a fund-raising campaign in Jaipur, including fruit and vegetable vendors, retailers, and those selling fruits. Additionally, several NGOs and social groups assisted in raising funds for the campaign.

This is the first instance of this kind of crowdsourcing happening in Rajasthan. At the JK Lone Hospital in Jaipur, ₹ 9 crore was raised in less than three months, and Hridayansh received the injection. The remaining sum must be deposited in three payments within a year. The state's police department donated over Rs. 5 crore by donating a day's salary of its personnel.

The injection, imported from the US had customs duty waived off by the Centre, which reduced the cost from Rs. 17.5 crore to Rs. 14.5 crore.

“We communicated the firm manufacturing the drug about it. The company agreed to provide the drug at Rs 9-cr and charge rest of the cost in three installments,” said Swapnil Sharma, uncle of the baby, who played a key role in arranging the funds.

The boy belongs to Masari Village in the Khedli area of Alwar, with the father being posted in Dholpur. Hridayansh's parents worked incredibly hard to raise funds and took help from police, and politicians in Bharatpur and appealed to Chief Minister Bhajan Lal Sharma for help.

All superintendents of police received a contribution request from the director general of police along with the family's bank account details.

Crowdfunded Rs 17.5 crores worth of injections
Image From Free press Journal

"According to the doctors, the Zolgensma injection is the only hope for the treatment of the baby and it can only be injected within two years of age. Time is running out. The cost of the injection is Rs 17.5 cr,” the appeal said.

Additionally, a crowdfunding request was sent to the Rajasthan Association of North America (RANA).
Success was evident because the infant had now gotten the shot.

“SMA is a rare genetic disorder that causes gradual deterioration of motor neurons, leading to severe challenges for patients. Conventional treatments have often fallen short in their effectiveness, leaving patients and their caregivers in search of more promising solutions,” said Dr Priyanshu Mathur, in charge of rare diseases at J K Lon Hospital.

J K Lon Hospital medical professionals noted that gene therapy attempts to treat the underlying cause of SMA by directly introducing a functioning copy of the faulty gene into the patient's cells.

A person with spinal muscular atrophy, a hereditary condition, loses the ability to govern muscle movement as a result of nerve cells in the brain stem and spinal cord dying. This causes muscle weakness that impairs breathing as well as limb mobility.

The multinational pharmaceutical company Novartis is the maker of Zolgensma (onasemnogene abeparvovec).

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