Baby in stunning fund-raising campaign to be treated with world's costliest drug

He was a month old when he was diagnosed with spinal muscular atrophy (SMA), a neuromuscular disorder that affects the nerves and muscles and leads to muscle weakness that worsens over time. At seven months, baby Devdan was confirmed with Type 2 SMA.

He is now two months shy of his second birthday, and a medical team from the National University Hospital (NUH) will soon begin treating him with Zolgensma, widely touted as the most expensive drug in the world, after a stunning fund-raising campaign.

Responding to queries from The New Paper yesterday, a spokesman for NUH said: "The treatment will be administered by NUH doctors.

"The patient is currently receiving multidisciplinary supportive care from our medical team at NUH.

"We are working with the family to provide support and assistance where possible. We are unable to comment further due to patient confidentiality."

Gene therapy

Approved by the United States Food and Drug Administration in 2019, Zolgensma, a one-time gene therapy for children with SMA, is a treatment that costs around $2.9 million.

The fund-raising campaign helmed by charity platform Ray of Hope managed to raise $2.869 million within 10 days of its launch on Aug 3, slightly ahead of its goal of $2.868 million.

Devdan's father, Mr Dave Devaraj, 33, is a civil servant, while his mother, Ms Shu Wen, also 33, is an interior designer.

They were overcome with joy at the news and Ms Shu said: "From the time Devdan was diagnosed, we knew that (Zolgensma) was the best choice, but we never imagined that it was possible to raise nearly $3 million."

Zolgensma is not approved by Singapore's Health Sciences Authority but can be imported under the Special Access Route and this process is set to get under way for Devdan's case.

While there are two alternatives - daily oral medication and intrathecal injection every four months for the rest of his life - his parents believe Zolgensma is the best treatment for the long run.

Devdan cannot stand, walk or run, and he often trembles when tired. If his condition is left untreated, his muscles will degenerate and lose strength, and he could face total immobility in his teens.

Said Ms Shu: "He is our bundle of joy, and his name means God's gift. Every day is a blessing and every milestone he has as a child is an achievement.

"It felt like the world was crashing down on us (when he was diagnosed)."

Nearly 30,000 people contributed to Devdan's fund-raising campaign.

Writing on the campaign page, one of the donors, Hughes Tong, said: "Sending much love out to Devdan. You are faced with so many obstacles in your life, but yet full of smiles and laughter.

"It is something we students, and many of us, need to learn from you. Push on Devdan!"

Donor Errol Tan said: "Dear Devdan, can't wait to see you grow up and be healthy. I know one day you will become as strong as papa Dave and as smart as mama Shu Wen, contributing to society in your own way."

Mr Tan En, general manager at Ray of Hope, said this was its "biggest and most ambitious" fund-raiser to date.

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"When Devdan's family approached us, we assured them that we would be in this together. Ray of Hope would handle the campaign and finances so they can focus on taking care of Devdan," said Mr Tan.

"We are grateful to be the trusted platform and charity to enable this connection between the donors and the family.

"It has been amazing to see how the Singapore community rallied to give hope to Devdan and his family."

Ray of Hope will be working with NUH's finance team to make the necessary payments, and donors will be updated once the funds have been transferred, Mr Tan said.

Grateful to all that have come forward to help, Ms Shu said: "We could never have imagined how many people would come forward to help. We are completely blown away by the level of support, love, and generosity that has poured in.

"You have given Devdan a second chance at life. A chance to walk and play with other children outdoors, to experience the world not bound to a wheelchair or breathing aids.

"With your generous contributions, we are excited to start working with the doctors and experts to move forward with the treatment for Devdan."