Singapore opens hearts, wallets for boy with rare genetic disease

A fundraising campaign supporting a 2-year-old who suffers from spinal muscular atrophy. Image: Ray of Hope
A fundraising campaign supporting a 2-year-old who suffers from spinal muscular atrophy. Image: Ray of Hope

Singapore is showing its good side to help a toddler with a rare genetic disease.

Strangers made a big downpayment of nearly S$2 million toward gene therapy for a 2-year-old boy known only as Devdan D who was born with spinal muscular atrophy that affects nerve cells in his brain and spinal cord. Local businesses have also rallied support by launching their own crowdfunding campaigns.

“As a one-time treatment, it will help Devdan improve muscle strength and increase survival with minimal deterioration. As parents, we want the very best for Devdan and for him to lead a life as “normal” as possible,” the campaign, signed off by parents who go by Dave and Shuwen, read.

Their Ray of Hope campaign started Aug. 3 and gave donors until Sep. 1 to help them afford Zolgensma, a gene therapy treatment which costs S$2,868,000 (US$2,125,000) and will prevent Devdan’s condition from getting worse.

As of today, it had already brought in S$1.8 million (US$1.3 million), over 60% of the goal.

If not treated, Devdan’s muscles will continue to weaken, hindering his “breathing, speaking, swallowing, and walking,” and will have to take oral medication and injections every four months for the rest of his life. 

The day after the campaign was launched, an update said that it had raised S$214,000 from over 2200 donors. Devdan’s parents did not immediately respond to messages seeking comment.

Every bit of the donations collected will go straight to the hospital for his treatment, the campaign wrote. Ray of Hope said it does not take a cut of the funds unlike other crowdfunding platforms. 

Local businesses such as clay coaster maker 306grams, pet patisserie Woofoo, bakery Levan Bakes have launched their own crowdfunding by selling their products and donating all proceeds to Devdan’s campaign.

Fan art and videos advertising the campaign in Mandarin and even a song sung by the mother’s associates were also posted on their socials.  

 

View this post on Instagram

 

A post shared by Devdan D (@love_devdan)

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CITY: SINGAPORECATEGORY: NEWSSUB-CATEGORIES: VIRAL

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