Rs 16 Crore raised in Singapore for treatment of 2-year-old Indian-born Devdan Devaraj

Devdan’s treatment included Zolgensma, a gene therapy costing 29 lakh Singapore dollars.

Singapore:

A two-year-old boy of Indian descent in Singapore has recovered from a rare neuromuscular disease and regained the ability to walk with the help of Singaporeans who donated nearly 30 lakh Singapore dollars (Rs 16, 68 crore) for his expensive treatment.

Devdan Devaraj is the only child of Indian-born civil servant Dave Deveraj and his wife Shu Wen Devaraj, a Chinese-born interior designer. Husband and wife are both 33 years old.

Devdan’s treatment included Zolgensma, a gene therapy costing 29 lakh Singapore dollars (Rs 16 crore) – billed as one of the most expensive drugs in the world.

“A year ago my husband and I couldn’t even imagine him walking. Back then even standing was a problem. So to see him now walking and even riding a tricycle with help is such a miracle for us,” the The Straits Times quoted mother Shu Wen Devaraj as saying on Wednesday.

In just 10 days in August last year, around 30,000 people donated a total of 28.7 lakh Singapore dollars (15.84 crore rupees) through the charity’s crowdfunding “Ray of Hope” for Devdan’s treatment.

Ray of Hope chief executive Tan En said the sum was the largest raised for a single recipient on his platform.

The amount represented nearly two-thirds of the 44 lakh Singapore dollars (Rs 24.3 crore) that Ray of Hope raised from 214 fundraisers on its site last year.

Tan said that on average, a fundraiser on the platform usually raises between SGD 2,000 to SGD 3,000 (Rs 11 lakh to Rs 16 lakh).

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

When Devdan was 1 month old, he was diagnosed with spinal muscular atrophy, which results in muscle weakness that gets worse over time. If left untreated, he could face complete immobility during his teenage years, among a host of other issues.

In September last year Devdan was treated with Zolgensma, a unique gene therapy treatment for children with spinal muscular atrophy, at the National University Hospital.

It is touted as the most expensive drug in the world and costs around SGD 2.9 million.

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

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