About 30,000 donors have come together to raise S$2.868 million for a two-year-old baby, Devdan D, to get a one-time-only gene therapy treatment Zolgensma, just 10 days after a crowdfunding campaign was launched.
Devdan’s parents, namely Dave and Shuwen, 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).
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.
In an update on Friday (13 Aug), Ray Of Hope stated on the crowdfunding page that they have achieved the goal to raise S$2.868 million in the span of 10 days since the crowdfunding campaign was launched.
“We are working with the NUH (National University Hospital) Finance team to make the necessary payments. Donors will be updated once the funds have been transferred,” it said.
Devdan’s parents expressed their gratitude to those who have contributed to the crowdfunding initiative, noting that the amount of money raised was “an astronomical figure” to them and that they have been “silently carried the feeling of helplessness” for over one and a half years.
“We are completely blown away by the level of support, love and generosity that poured in. Thank you to everyone who have helped us whether by making a contribution, spreading the word, sending us words of encouragement or keeping us in your thoughts and prayers.
“We are deeply grateful. You have given Devdan a second chance at life,” they remarked.
Dave and Shuwen further noted that they are excited to start working with the doctors and experts to move forward with the treatment for Devdan.
“When he is older, we will show him the messages that were written to him and tell him how each of you have came together and helped make his life possible. You have made it possible to cross this a big milestone. Thank you for being a part of Devdan’s journey,” they added.
