Singapore — In an update to the news about a little boy who has captured many hearts in Singapore, the crowdfunding efforts his parents launched has met its goal, which means 22-month-old Devdan Devaraj can get the medical treatment he needs.
Devdan was born with a rare condition that damages nerve cells in the brain and spinal cord. He was diagnosed to have Type 2 Spinal Muscular Atrophy (SMA).
This condition, if left untreated, could lead to “progressive muscular weakness and trouble with activities such as breathing, speaking, swallowing, and walking.”
However, there is a gene therapy treatment available called Zolgensma, which was approved only two years ago and costs US$ 2.125 million (around SGD 2.868 million). Zolgensma “is designed to target the genetic root cause of SMA,” and will stop its progression “sustain the remaining muscle function needed” for young Devdan to survive.
On Friday afternoon (Aug 14), Devdan’s parents wrote that day was a “pivotal moment for our family,” as the “astronomical” sum of $2.9 million they needed had been raised.
What had seemed impossible had been achieved, wrote the toddler’s mum, acknowledging that they had “silently carried the feeling of helplessness for over one and a half years, wishing that time would slow down while bracing ourselves for the regression that will only get worse.”
The young family thanked the thousands of donors who had given amounts ranging between one to hundreds of dollars.
His mum wrote, “We could never imagine how many people will come forward to help. From family and friends, to their family and friends, businesses, communities, strangers, people that we will never get a chance to meet and thank in person. We are completely blown away by the level of support, love and generosity that poured in.”
She added that donors 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.”
The family is excited to work with the doctors so that Devdan’s treatment may begin.
She also wrote that when the young boy is older, his parents will show him “the messages that were written to him and tell him how each of you have come together and helped make his life possible.“
The New Paper reported on Monday (Aug 16) that Devdan will receive treatment at the National University Hospital (NUH). The report added that Zolgensma is the costliest drug in the world.
A spokesman from the NUH is quoted as saying that the toddler “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.”
While Zolgensma has not been approved yet by the Health Sciences Authority, the drug may be imported under the Special Access Route. /TISG
Despite tough times, Singaporeans open their hearts and wallets wide to toddler with rare disease