The crowdfunding campaign which was launched to raise money for a two-year-old baby, Devdan D, to get a one-time-only gene therapy treatment Zolgensma has now reached over S$2.617 million at the time of writing.
Devdan’s parents launched the crowdfunding campaign with Ray Of Hope on 3 August to raise S$2.868 million for their son’s treatment, who was diagnosed with Type 2 Spinal Muscular Atrophy (SMA), and hope to achieve it by 1 September.
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.
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.
Zolgensma is said to be the most expensive drug in the world valued at USD2.125 million (S$2.868 million) per patient, which will help Devdan improve muscle strength and increase survival with minimal deterioration.
At the time of writing, the crowdfunding campaign has reached S$2.617 million, over 90 per cent of the goal.
In an Instagram post earlier today, Devdan’s parents expressed their gratitude to those who have contributed to the crowdfunding initiative.
“Thank you to friends, family and ROH, they are helping us around the clock. They are probably on their last battery. We are almost there, we can do it.
“Thank you to all the people around us. For wanting to make a difference to Devdan’s life. We are very grateful for your contribution,” they wrote.
According to the crowdfunding page, all 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.