S$2.9m crowdfunded treatment helps S’porean boy with rare genetic disorder to stand & walk with support

His mother said that seeing him walk and ride a tricycle with some assistance was "a miracle".

Low Jia Ying | January 20, 2022, 04:25 PM

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Just four months after receiving treatment for a rare genetic disorder, 2-year-old Devdan Devaraj can now stand and walk with support.

Devdan's gene therapy treatment, called Zolgensma, cost S$2.868 million.

It is one of the most expensive treatments on the market today for Type 2 Spinal Muscular Atrophy, a rare genetic condition which damages nerve cells in the spinal cord and brain, affecting one's ability to walk, breathe, swallow and speak.

In August last year, almost 30,000 donors raised nearly S$2.9 million to help Devdan's parents pay for the treatment.

Speaking to The Straits Times, Devdan's mother, Shu Wen Devaraj, said it was "a miracle" to see him walk and ride a tricycle with some assistance.

Devdan can now stand and walk with support

According to updates from Devdan's Instagram page on Oct. 11, 2021, Devdan reached some important milestones after his treatment.

He has been able to "walk with support" and can also stand "with little support".

Devdan's condition can lead to total disability if untreated.

The Zolgensma treatment helps to improve his muscle strength and increase his chances of survival with little deterioration.

Devdan received his Zolgensma treatment on Sep. 25, 2021.

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His mother told ST that a year ago, they could not even imagine Devdan walking, as even standing was an issue for him.

Largest sum raised on Ray of Hope platform

Devdan's fundraising campaign on Ray of Hope, a crowdfunding platform, was also one of largest the platform has seen.

Ray of Hope's general manager, Tan En, told ST that the sum raised for Devdan's campaign was two-thirds of total donations to its site last year.

According to Tan, the average amount collected on its platform is between S$2,000 to S$3,000.

Devdan's parents told Mothership that the decision to crowdfund Devdan's treatment "took a lot of encouragement".

"There was no other choice nor considerations, this was the last straw. We realised the situation was now or never."

"Once Ray of Hope got the website going, everything just snowballed."

Devdan's campaign managed to hit its goal within 10 days of its launch date on Aug. 3, 2021.

The family initially had no hope in being able to afford the treatment before embarking on the campaign.

"Before embarking on this donation drive, we braved ourselves for a harsh world but the reverse happened and we ended up receiving overwhelming support," said Devdan's parents.

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Top photos via @love_devdan/IG