A Tiny Warrior’s Journey with SMA
Imagine a baby who, at just a month old, gets a diagnosis that seems straight out of a sci‑fi movie: spinal muscular atrophy, or SMA for short. This condition, which chips away at the nerves that command muscles, leaves little Devdan feeling weaker as the months roll on.
From Diagnosis to Hope
- At one month old, Devdan receives the first warning shot: SMA.
- By seven months, doctors pin down the tough version—Type 2 SMA.
- Now, with just two months left before his second birthday, a bold plan is in motion.
Enter Zolgensma
The world’s most expensive drug, Zolgensma, is slated for his next treatment. How did this glittering opportunity come about? A whirlwind fundraising effort—think charity galas, social media marathons, and a chorus of supporters—culminated in a donation that made the medical dream a reality.
NUH’s Role in the Story
National University Hospital (NUH) is set to hand over the sword of hope. A spokesperson, speaking on their behalf to The New Paper, let us in on the drama:
“Our doctors will guide the treatment,” they said.
“The team is already juggling multiple supportive measures for Devdan,” the voice added.
“While we’re cheering from the sidelines, privacy keeps us from spilling every detail,” the spokesperson closed.
Why This Matters
It’s more than a medical story—it’s a testament to what happens when science, compassion, and community band together. If your heart races for little heroes and big medicine, you’re not alone. The buzz around Zolgensma beats louder each day because it means sweat and bravery might finally tip the scale.
The Takeaway
In a world where a single day can change a life, watch as Devdan’s path turns into a testament of resilience and collective hope. Because while the science may be cutting edge, the story behind it is pure human spirit. Who could have guessed a tiny bundle of joy would make history one treatment at a time?
Gene therapy
Near‑Miss Billion‑Dollar Miracle: A New Hope for Devdan
A one‑off gene therapy called Zolgensma – approved by the U.S. FDA in 2019 and priced at roughly $2.9 million – has just pulled off a heroic fundraising stunt in Singapore.
Fly‑by Campaign Hits the Mark
Within just 10 days of launching on August 3, the charity platform Ray of Hope raised $2.869 million – a hair above the target of $2.868 million. It’s a testament to the generosity of a community that stands with a little boy who needs a miracle.
Meet the Family
- Father: Dave Devaraj, 33, civil servant.
- Mother: Shu Wen, 33, interior designer.
- Child: Devdan, little fighter with Spinal Muscular Atrophy (SMA).
“We knew from the jump that Zolgensma was the best shot,” Shu confides. “We never imagined we’d raise almost three million dollars.”
Singapore’s Path Forward
While the Health Sciences Authority hasn’t officially cleared Zolgensma, two routes remain: a special import approval or ongoing treatments (daily pills or quarterly injections). Though the latter keeps a patient tethered for life, the parents see Zolgensma as a “one‑time fix” that could give Devdan a full three‑digit future.
Devdan’s Journey
He can’t stand, walk or run, and often shakes when exhausted. Left unchecked, his muscles would crumble, erasing mobility in his teens. The parents view the therapy as a gift of “God’s gift” – meaning his name – and a chance for the whole world to see him smile again.
“Each milestone he hits as a child is a triumph,” Shu says. “Getting diagnosed felt like the world was crumbling. Now, we’re standing on a new horizon.”
Thank‑You Notes from the Crowd
- Hughes Tong: “Sending love to Devdan. Though obstacles are many, his smile and laughter are unvanquished.”
- Errol Tan: “Can’t wait to see him grow healthy and strong like his dad and clever like his mom. He’ll make a mark in society.”
Ray of Hope’s Role
Mr. Tan En, the forum’s GM, calls this “the biggest and most ambitious fundraiser” yet. They guided the family through the process, letting them focus on caregiving.
“We’re grateful to be the trusted platform that unites donors and the family, and the Singapore community’s response was simply amazing,” Tan said.
In partnership with NUH’s finance team, the next step is to process payments and update donors once funds move. The team is ready to jump into action.
What the Future Holds
With the generosity in its final legs, Ms. Shu thanked everyone for giving Devdan a second chance at life: walking, playing, exploring the world unconfined by wheelchairs or breathing aids.
“Your generosity uplifts us,” she said. “We’re excited to work with doctors and experts to move forward.”
— First published in The New Paper. © · Permission required for reproduction.
