[Sg] - Boy treated with $3m drug donated by 30,000 people can now walk with support

[UltimaOnline]

SINGAPORE - Two-year-old Devdan Devaraj, who has a neuromuscular disease, can now stand and walk with support, thanks to the almost $3 million donated by the public which allowed him to be treated with the "world's most expensive drug".

"A year ago, my husband and I couldn't even picture him walking. At that point, even standing was an issue. So to see him walk now and even ride a tricycle with some assistance is such a miracle to us," his mother, Mrs Shu Wen Devaraj, told The Straits Times.

In just 10 days in August last year, about 30,000 people donated a total of $2.87 million through crowdfunding charity Ray of Hope for Devdan's treatment.

Ray of Hope's general manager, Mr Tan En, said the sum is the largest raised for a single beneficiary on its platform.

The amount was almost two-thirds of the $4.4 million Ray of Hope collected from 214 fund-raisers on its site last year. Mr Tan said that on average, a fund-raiser on the platform usually collects between $2,000 and $3,000.

He said of the campaign for Devdan: "To my knowledge, I believe it's among the largest for a single fund-raiser in Singapore."

Devdan is the only child of civil servant Dave Devaraj and his interior designer wife. The couple are both 33 years old.

When he was one month old, the Singaporean boy was diagnosed with spinal muscular atrophy, which leads to muscle weakness that worsens over time. If left untreated, he could face total immobility in his teens, among a host of other problems.

In September last year, Devdan was treated with Zolgensma, a one-time 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 $2.9 million.

Mrs Devaraj said: "We cannot thank the public enough for their donations and we will always be grateful to them. I hope they know that their kindness has changed Devdan's entire life."

https://www.straitstimes.com/singap...g-donated-by-public-can-now-walk-with-support