Indian boy regains ability to walk with Rs 16 crore drug; the money for the treatment came from Singaporeans

Credit: love_devdan | Photo credit: Instagram

Highlights

  • Devdan Devaraj was diagnosed with spinal muscular atrophy when he was just one month old
  • Singaporeans have raised money for the boy’s treatment through a fundraiser
  • Devdan was treated with Zolgensma in September last year

A 2-year-old boy of Indian descent, who suffered from a rare neuromuscular disease, has regained the ability to walk after being given a gene therapy drug costing 29 lakh Singapore dollars (Rs 16 crore).

The money for the drug came from Singaporeans who donated nearly 30 lakh Singapore dollars for the expensive treatment, according to a PTI report.

Devdan Devaraj, who is the only child of Indian-born civil servant Dave Devaraj and his wife Shu Wen Devaraj, needed the drug Zolgensma, which is one of the most expensive drugs in the world.

The mother, Shu Wen Devaraj, said The Times of the Strait that things were looking bleak as her son couldn’t even stand properly in 2021. But now seeing him walk and ride his bike is a miracle for her and her husband.

Things changed for the family in just 10 days in August, when around 30,000 Singaporeans raised a total of S$8.7 lakh through crowdfunding for Devdan’s treatment.

Devdan was just a month old when he was diagnosed with spinal muscular atrophy, a condition that causes muscle weakness that worsens over time. Her treatment with Zolgensma, a unique gene therapy treatment for children with spinal muscular atrophy, took place at National University Hospital in September 2021.

“We can’t thank the public enough for their donations and we will always be grateful to them. I hope they know their kindness changed Devdan’s entire life,” Shu Wen Devaraj said.

Tan En, managing director of “Ray of Hope”, said the sum was the largest ever raised for a single beneficiary on the crowdfunding platform.

“To my knowledge, I think this (the contribution for Devdan) is among the largest for a single fundraiser in Singapore,” he said.

The managing director added that a fundraiser, on average, raises between SGD2,000 and SGD3,000 (Rs 11 lakh to ₹16 lakh).

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