SINGAPORE – At 22 months old, little Devdan would be a toddler, except that he cannot stand, let alone toddle.
When he was just a month old, he was diagnosed with spinal muscular atrophy (SMA), a genetic condition that affects nerves and muscles and could get worse over time if left untreated.
But there is now hope for Devdan, who was confirmed to have Type 2 SMA at seven months, thanks to the generosity of donors who raised $2.869 million in just 10 days.
All the money will go towards Zolgensma, dubbed “the most expensive drug in the world”, to treat the baby’s neuromuscular disorder.
The one-time gene therapy for children with SMA, which costs around $2.9 million, was approved by the United States Food and Drug Administration in 2019.
It is not approved by Singapore’s Health Sciences Authority but can be imported under the Special Access Route. This process is set to get under way for Devdan, who is being treated by a medical team at the National University Hospital (NUH).
The fund-raising campaign by charity platform Ray of Hope started on Aug 3.
His 33-year-old parents, Mr Dave Devaraj, a civil servant, and Ms Shu Wen, an interior designer, were overcome with joy when they learnt the fund-raising target had been reached, The New Paper reported on Monday (Aug 16).
“From the time Devdan was diagnosed, we knew that (Zolgensma) was the best choice, but we never imagined it was possible to raise nearly $3 million,” Ms Shu told TNP.
While there are two alternative treatments for Devdan – daily oral medication and intrathecal injection (into the spinal cord) every four months for the rest of his life – his parents believe Zolgensma is the best treatment in the long run.
Apart from not being able to stand or walk, Devdan often trembles when tired, his parents said.
If his condition is left untreated, his muscles will degenerate and lose strength, and he could face total immobility in his teens. Feeding and breathing problems could also develop.
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).”
Thanking the donors, 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.”
Nearly 30,000 people contributed to the fund-raising campaign, reported TNP.
One of them, Hughes Tong, wrote on the campaign page: “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!”
A spokesman for NUH told TNP that Devdan is currently receiving multidisciplinary supportive care from its medical team.
Mr Tan En, general manager at Ray of Hope, told TNP this was its “biggest and most ambitious” fund-raiser to date.
“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.
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