When the fundraising campaign had gone stagnant, a good Samaritan stepped in – ensuring that a five-month-old boy with a severe genetic disorder could be treated with a $1.5M donation.
On Nov 12, parents Nabeel Salim Abdat, 30, and Syahirah Yakub, 31, told the Straits Times that baby Zayn – diagnosed with Type 1 spinal muscular atrophy (SMA) at about five weeks old – would be able to get the drug Zolgensma.
SMA is a rare genetic condition of the central nervous system that affects the nerves and muscles, and can lead to respiratory problems, scoliosis and osteoporosis.
However Zolgensma – a one-time treatment that stops the condition from worsening – is the world’s most expensive medication that comes with a prohibitive price tag of $3 million.
The couple had earlier raised $1.5 million through a campaign that started in August on the crowdfunding platform Ray of Hope – but it wasn’t enough.
Then one generous individual stepped forward to donate a cool $1.5 million to help baby Zayn, shared former Member of Parliament Amrin Amin in a Facebook post two days ago.
That donor had chosen to remain anonymous.
“Such kindness reminds us there’s still so much compassion and positivity in our community, even during this difficult time,” the 44-year-old said.
‘He smiles all the time’
In a Facebook post shared on Thursday (Dec 1), Singaporeans Nabeel and Syahirah shared that the “yummy and juicy” Zolgensma was already infused into their baby’s veins.
“The infusion that lasted for an hour may change [his] life for the better,” they said.
Speaking to AsiaOne on Friday (Dec 2), Nabeel shared that while it’s still too early to see any improvements from Zayn after being treated with Zolgensma, there has been progressing when he was on Risdiplam, a previous medication.
It has been a roller coaster ride for the family, the data centre engineer said, adding that Zayn’s condition is “stable”.
“There has been more movement from his hands and legs, and he’s able to turn his head too. [And] he smiles all the time too,” he said.
“We’re very relieved and happy for him, and excited to see his improvements.”
After spending 58 days at the paediatric intensive care unit at National University Hospital, Zayn has been moved to the high-dependency unit.
But it will take another week or two before the infant will be discharged, Nabeel said.
“My wife left her job to care for him. But we also involved his grandparents in helping with simple tasks and caring for him.’
Support from the community
The Ministry of Health announced in July 2019 that they have jointly established the Rare Disease Fund (RDF) with the SingHealth Fund – with the government providing $3 for every dollar donated by the public.
While the RDF promises to support Singaporeans with specific rare diseases who require expensive treatments, Zolgensma and SMA are not included in the list of five “life-saving” medicines and conditions.
And in a written reply to a parliamentary question by Aljunied GRC MP Leon Perera on Nov 8 this year, Health Minister Ong Ye Kung acknowledged that there are patients with rare diseases who require medications that are not currently supported by the RDF.
“Medicines for rare disease patients can exceed $200,000 per patient annually, with varying efficacies, and our healthcare financing system is not designed to support such high-cost treatments,” he said.
But it’s heartening that some have been able to obtain support from the community through crowd-sourcing or other charity funds, Ong noted, adding that his ministry encourages members of the public to support the RDF with donations – so that more medicines and conditions can be listed.
Another baby here treated with Zolgensma
In September 2021, a two-year-old toddler named Devdan was also treated with Zolgensma after a campaign that raised more than $2.8 million.
Devdan was only a month old when he was diagnosed with SMA, the Straits Times reported at that time.
While thanking all the donors who made Devdan’s treatment possible, Shu Wen, the boy’s grateful mother said: “It’s been a blessing to have been able to witness such overwhelming support and encouragement from everyone.”
But in January 2021, several donors asked a woman for refunds after her son with SMA had died.
After Rayyan Qush was diagnosed with the genetic disorder, his mother Diana began an online fundraising drive and managed to raise a total of $1.1 million in just a month.
Barely 10 minutes after his family shared news of Rayyan’s death across the fundraising platforms, several social media users started questioning the whereabouts of the donations.
Speaking to AsiaOne at that time, Emilia, the cousin of the boy’s mother, shared that she had updated donors across social media on how they could get their donations back
Approximately 20 people had requested for a refund, she said then.
This article was first published on AsiaOne and republished on theAsianparent with permission.
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