Rs 16 Crore Raised In Singapore For Treatment Of Indian-Origin 2-Year-Old

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Devdan’s treatment includes Zolgensma, a gene-therapeutic valued at S ৯ 2.9 million.

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Singapore:

A two-year-old boy of Indian descent in Singapore has recovered from a rare neurological disease and regained the ability to walk with the help of Singaporeans who donated about S 3 million (Rs 16.68 crore) for his expensive treatment.

Devdan Devraj is the only child of Indian-origin civil servant Dave Devraj and his Chinese-born interior designer wife Shu Wen Devraj. Husband and wife are 33 years old.

Devdan’s treatment includes Zolgensma, a gene-therapeutic valued at S ২ 2.9 million (Rs 160 million) – one of the most expensive drugs in the world.

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“A year ago, my husband and I didn’t even see him walking. At that time, even standing was a problem. So seeing him now walking and even riding a tricycle with some help is a miracle for us.” The Straits Times quoted mother Shu Wen Devraj as saying on Wednesday.

In just 10 days in August last year, about 30,000 people donated a total of S 28 28.7 million (Rs 15.84 crore) through the crowdfunding charity Ray of Hope for Devdan’s treatment.

Tan Ann, general manager of Ray of Hope, says the biggest fundraiser for the single beneficiary has been on his platform.

The amount was about two-thirds of the অফ 4.4 million (Rs 24.3 crore) ray of hope that was collected from 214 fundraisers on its site last year.

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An average fundraiser on the platform typically collects SGD2,000 and SGD3,000 (Rs 11 lakh to Rs 16 lakh), Tan said.

“To my knowledge, I believe this (contribution to Devdan) is the largest single fundraiser in Singapore,” he said.

When Devdan is 1 month old, he develops atrophy of his spinal muscles, which over time leads to muscle weakness. If left untreated, she may experience complete paralysis, among many other problems in her teens.

In September of last year, at the National University Hospital, Devdan was treated with one-time gene therapy, Zolgensma, for children with spinal muscle atrophy.

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It is considered to be the most expensive drug in the world and costs about 2.9 million SGD.

“We can’t 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 whole life,” said Shu Wen Devraj.

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