Singapore opens hearts, wallets for boy with rare genetic condition

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Singapore is showing its bright side in helping a toddler with a rare genetic condition.

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

“As a single treatment, it will help Devdan improve muscle strength and increase survival with minimal deterioration. As parents, we want the best for Devdan and for him to lead as ‘normal’ a life as possible, ”the campaign read, signed by parents passing through Dave and Shuwen.

Their Ray of hope The campaign began on August 3 and gave donors until September 1 to help them afford Zolgensma, a gene therapy treatment that costs S $ 2,868,000 (US $ 2,125,000) and will prevent Devdan’s condition worsened.

To date, he has already grossed S $ 1.8 million (US $ 1.3 million), more than 60% of the goal.

If left untreated, Devdan’s muscles will continue to weaken, preventing him from “breathing, talking, swallowing and walking,” and will need to take oral medications and injections every four months for the rest of his life. his life.

The day after the campaign launched, an update said it had raised S $ 214,000 from more than 2,200 donors. Devdan’s parents did not immediately respond to messages seeking comment.

Every part of the donations collected will go directly to the hospital for treatment, the campaign wrote. Ray of hope said it does not take a share of the funds unlike other crowdfunding platforms.

Local businesses such as 306 gram clay coasters maker, Woofoo pet pastry shop, Levan Bakes bakery have started 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 social media.

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