Parents of a two-year-old baby, Devdan D, launched a crowdfunding campaign with Ray Of Hope to raise S$2.868 million for their son, who was diagnosed with Type 2 Spinal Muscular Atrophy (SMA), to get a one-time-only gene therapy treatment Zolgensma.
SMA is a rare condition that damages nerve cells in the brain and spinal cord, which may lead to progressive muscular weakness and trouble with activities – such as breathing, speaking, swallowing, and walking – if left untreated.
According to the crowdfunding campaign page, Devdan will be turning two years old in October this year.
“He is imaginative, has a great attention span and can play independently on his own,” the campaign page reads.
It stated that Devdan’s parents are working with crowdfunding charity Ray Of Hope to raise S$2.868 million and hope to achieve it by 1 September, so that Devdan can be treated with Zolgensma.
The gene therapy is said to be the most expensive drug in the world valued at USD2.125 million per patient. It will help Devdan improve muscle strength and increase survival with minimal deterioration.
Though there are two other alternatives for Devdan – daily oral medication and intrathecal injection every month for the rest of his life – his parents believe that Zolgensma can be more cost-effective in the long run.
“As parents, we want the very best for Devdan and for him to lead a life as ‘normal’ as possible. However, the staggering cost of Zolgensma is posing a huge challenge,” said the parents.
The crowdfunding campaign has raised about S$1,258,675 at the time of writing.
It noted that the donations will be channelled directly to Ray of Hope’s bank account, which will then pay the hospital directly for the cost of treatment. The hospital requires one month to process the paperwork and to bring the drug to Singapore.
“In the unfortunate case that we are unable to raise sufficient funds for Devdan’s treatment, we will work with Ray of Hope to allocate the donations received to support other ongoing campaigns on Ray of Hope’s website.
“Donors will also get a choice to request for a refund on their donation. The refund request will have to be made by a stipulated date after the closure of the campaign,” it stated.
Members of the public who wish to make donations, or find more information about the campaign can do so here.
