Son diagnosed with rare disease, Delhi couple turns to crowdfunding for injection worth Rs 17.5 crore; AAP MP lends a hand
Symptoms of SMA generally appear between 6 to 18 months after birth.
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On Friday, Sanjay Singh, in a press conference, appealed to people across the country to support Vehant. (File Photo) Mohit and Garima Jain’s lives have come to a grinding halt. In February, their only child, 16-month-old Vehant, was diagnosed with a rare genetic disease that has rendered him nearly immobile.
Vehant has Spinal Muscular Atrophy (SMA) Type 2, also known as Dubowitz disease, which is characterised by muscle weakness that develops in children between the ages of 6 and 12 months.
“Aisa lagta hai paanv ke neeche se zameen nikal gayi hai (It feels like the ground has disappeared from under my feet),” said Mohit, an engineer.
After Vehant was born in 2023, the first eight months passed by normally. Then, the couple began to notice certain things — Vehant’s neck would droop while crawling, his muscles grew weak, and his weight did not increase. Eventually, movement stopped.
The family took their child to Sir Ganga Ram Hospital in February, where doctors told them about the disease. Symptoms of SMA generally appear between 6 to 18 months after birth. Most patients can survive past the age of 25 years if supported by constant care.
With the initial shock of the diagnosis yet to wear off, the family came face to face with another hurdle — the cost of medication, an injection priced at Rs 17.5 crore. A single-shot infusion, it is to be administered before the child turns two years to be effective.
Mohit said while he earns Rs 1 lakh a month and can provide his family a decent life, the injection is simply unaffordable. Garima is a chartered accountant but left her job after Vehant was born to look after him. She did not join back once he was diagnosed with the disease.
“We have been in a state of panic since February,” said Garima.
The couple, who live in Northwest Delhi’s Tri Nagar, then got in touch with other parents who got monetary support for the injection through crowdfunding. “They told me I should meet politicians and social media influencers,” said Mohit.
While the latter were not able to help, politicians were busy due to elections. “Someone then told me we should meet AAP MP Sanjay Singh,” said Mohit, adding that he met him right after the elections and the leader promised to help Vehant.
On Friday, Singh, in a press conference, appealed to people across the country to support Vehant. “… I have provided financial assistance of Rs 1 lakh from my side. I appeal to the people that everyone should come forward to save the life of this child and help him financially according to their capacity,” he said.
Mohit has now collected around Rs 24 lakh; Rs 5-6 lakh came in after the MP’s appeal. “Today I got many calls from Punjab, Gujarat, Telangana… many asked how they could help,” he said.
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