In a growing human population of 7.9 billion people, there are more than 7,000 rare diseases in the world.
Some are left undiscovered and untreated. Some have never been studied, nor has a cure ever been found.
For two-year-old Devdan Devaraj who has a neuromuscular disease, however, he was saved by the kindness that the public extended to him by donating almost $3 million to receive the expensive treatment that will let the little boy finally stand and walk.
This is his story.
Spinal Muscular Atrophy
When Devdan was just born, he was diagnosed with Type 2 Spinal Muscular Atrophy.
Perhaps you are asking: what is Spinal Muscular Atrophy, and why is the treatment so expensive?
Well, the following infographics explain his condition, its symptoms, and treatment in a succinct manner:
In essence, the disease will continue to atrophy his muscles as he grows until it inevitably affects his ability to do basic things like breathing, swallowing and walking.
And owing to the rareness of the disease, there aren’t a lot of effective treatments that are FDA-approved for children besides Zolgensma, which is a one-time gene therapy dose that is injected intravenously (IV), that directly targets the root cause of Spinal Muscular Atrophy.
However, Zolgensma is notoriously expensive, costing USD$2.125 million which is equivalent to SGD$2.868 million.
Ray of Hope
In a bid to give their darling son a better qualitative lifestyle, where he gets the chance to function and live like a normal child, the 33-year-old couple—Mr Dave Deveraj and Mrs Shu Wen Deveraj—reached out to Ray of Hope, a crowdfunding charity platform where 100% of the donations goes towards the verified beneficiary.
In just ten days last August, nearly 30,000 people came together and donated a total of $2.87 million for Devdan’s treatment.
Sometimes, miracles do happen, and they are created by men themselves.
The General Manager of Ray of Hope, Mr Tan En, remarked that this was among one of the largest fund-raisers in Singapore.
Thus, in August of last year, the donated funds were successfully transferred to National University Hospital, whose staff reached out to the manufacturers of the gene-therapy Zolgensma.
In the following month of September, Devdan received his treatment of Zolgensma.
His journey to becoming stronger and healthier is just beginning though, since Devdan has to go through regular physiotherapy and assessments to ensure that his muscles are consistently trained and built up until they can function normally.
In an Instagram post, Devdan’s family said: “Our family can never thank you enough to those who have helped and encouraged us. Without your support, Devdan would have lost his abilities instead of gaining them. You’ve filled a tough year full of miracles, love, and hope.”
Being able to see a toddler, once struggling on his feet, becoming able to move around, laugh, and have fun with his toys and at the playground, is certainly a heart-warming sight to witness.
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