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For first-time parents Shu Wen and Dave, learning that their then one-month-old son would require expensive gene therapy to be able to walk and play like other children came as a huge blow.
They were unsure of how they would be able to finance the S$2.868 million treatment.
Their son, Devdan, now 22-months-old, was diagnosed with Type 2 Spinal Muscular Atrophy, a rare genetic condition which damages nerve cells in the spinal cord and brain, affecting one's ability to walk, breathe, swallow and speak.
On Aug. 3, his parents launched a campaign to raise funds for his treatment through crowdfunding charity Ray of Hope's platform.
Rare genetic condition
Type 2 Spinal Muscular Atrophy (SMA2) is an extremely rare genetic condition, affecting 1 in 10,000 births, according to the National Organization of Rare Diseases (NORD).
For patients with SMA2, muscle weakness typically occurs between six and 12 months of age.
Young children with the condition will usually be able to sit upright independently, but will require assistance to walk anywhere, according to NORD.
By the time they reach their mid-teens, they are unlikely to be able to sit independently.
Devdan was diagnosed with SMA2 when he was just a month old.
According to medical documents seen by Mothership, Devdan could face total disability if his condition is left untreated.
Gene therapy to cost S$2.9m
Doctors recommended Zolgensma, a one-time gene therapy treatment, to the family when they first received the diagnosis.
But the hefty price tag of S$2.868 million made them uncertain whether they would be able to purchase the drug with their finances.
According to their campaign page, the FDA-approved treatment is only suitable for children below the age of two. Devdan is currently two months shy of his second birthday which falls in October.
His parents hope to be able to raise the amount by September 1, 2021, as it takes a month for the hospital to process the paperwork and to bring the drug over.
Zolgensma would help to improve his muscle strength and increase his chances of survival with little deterioration.
Devdan's parents said,
"We understand that this is an extremely big amount but we thank everyone who has made the impossible feel possible as we get closer to our target each day."
Alternative treatments, if he were to miss this chance at gene therapy, include daily oral medication and intrathecal injections every four months for the rest of his life.
His parents estimate that Zolgensma would ultimately be more cheaper in the long-run.
Approaching Ray of Hope to crowdfund treatment costs
The decision to crowdfund Devdan's treatment "took a lot of encouragement", said his parents.
"There was no other choice nor considerations, this was the last straw. We realised the situation was now or never."
"Once Ray of Hope got the website going, everything just snowballed."
The family initially had no hope in being able to afford the treatment before embarking on the campaign.
"Extremely grateful and touched" by outpouring of support
Devdan's parents told Mothership that they were touched by how many people have come forward to spread word about their campaign.
At the time of writing (Aug. 7), the campaign has raised nearly S$1m out of the S$2.9m goal.
Source: Ray of Hope website.
This is 33 per cent of the total amount needed.
"We are extremely grateful and touched for all the support. Before embarking on this donation drive, we braved ourselves for a harsh world but the reverse happened and we ended up receiving overwhelming support."
Donate to Devdan's crowdfunding campaign page here.
Keep updated with Devdan's fundraising campaign on Instagram.
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Top photo from @love_devdan/Instagram