PUBLISHED ONMarch 27, 2026 10:12 AMBYKhoo Yi-HangEsther LamThe parents of a 10-month-old baby born with a rare genetic disease were overwhelmed with emotion on Friday (March 27), having secured the $2.4million needed for a one-time gene therapy which is not covered by insurance or government subsidies.
Speaking to AsiaOne, the boy's mother Norhaziqah Rosli, 35, said, "Reaching the target felt surreal for our family.
"There were so many moments along the way where we didn’t know if we would make it, so when we finally did, it was overwhelming in the most emotional way.
"We felt a deep sense of relief, gratitude, and hope."
Norhaziqah and her husband Rahman Rahim, 37, started their crowdfunding campaign on Ray of Hope with the help of a volunteer on Jan 5 for their fourth child Faziq, who was born with Spinal Muscular Atrophy (SMA) which causes muscles to weaken over time.
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The couple are now waiting for the one-time gene therapy, Zolgensma, to arrive from the US in about eight to 10 days, and keeping Faziq mostly home so that he doesn't fall sick before the treatment. He is scheduled for an elective admission on April 14.
"We haven’t had the chance to celebrate yet, as our focus now is on Faziq’s treatment," said Norhaziqah.
"But being able to hold Faziq and know that he now has a chance at treatment is already the greatest blessing for us," she added.
Norhaziqah and Rahman lost their first child Faris to SMA in June 2022, before his sixth birthday.
At the time, gene therapy was not yet available.
The couple received the frightening news that Faziq also had SMA during her second trimester.
He has been taking the oral medication Risdiplam since birth to delay the disease progression and is also undergoing physiotherapy at National University Hospital (NUH).
The medication costs $4,800 a month, but will increase to $12,000 a month as he grows.
While Risdiplam is covered by the Medical Assistance Fund, doctors recommended Zolgensma as Faziq's best chance at stopping SMA early.
Having lost Faris to SMA, Norhaziqah told AsiaOne on Tuesday that she was constantly weighed down by worries — including the question: "What if his symptoms appear before he manages to get treatment?"
"I hope that Faziq's body will stay strong until (then)," she said.
In donation messages on Ray of Hope, many good Samaritans left well-wishes for Faziq, expressing hope that the child grows up healthily.
"Don't give up! Good things will come with every difficulty you face in life," an anonymous donor wrote.
Another commented: "Baby Faziq, many are touched by your story as I, a mother of two, have."
"We love you Faziq," an anonymous donor also said. "Grow healthily and be happy always."
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