Baby Faziq successfully receives S$2.4 million treatment, family focusing on his recovery

The family of baby Faziq, who suffers from Spinal Muscular Atrophy (SMA), announced that he has successfully received the S$2.4 million Zolgensma gene therapy treatment.

"At this stage, we are focusing on his recovery and close monitoring," said the family on Instagram on Apr. 24.

"After the treatment, regular follow-ups, medications (such as steroids), and blood tests are needed to ensure everything remains stable.

We will continue to keep him safe at home and are taking things one step at a time as he begins this new chapter. Thank you for your continued prayers, love, and support!"

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A post shared by A chance for baby Faziq ☀️ (@hopeforfaziq)

S$2.4 million for treatment

In 2025, Faziq's parents, Norhaziqah and Rahman, found out they were expecting their fourth child.

But in her second trimester, their doctor told them that Faziq suffered from SMA, the same disease Faziq's older brother had.

Faziq's older brother, Faris, was diagnosed with SMA in 2017, and despite every effort, he passed away on Jun. 24, 2022.

"We were devastated," the couple said in their fundraiser, hosted on charity platform Ray of Hope.

"But also grateful, because he (Faziq) was still asymptomatic. He still had time."

SMA is a rare genetic disease that destroys motor neurons — the cells that control movement, swallowing, and breathing.

Once symptoms begin, they are irreversible and incurable.

Since birth, Faziq has been on a daily medication called Risdiplam. This helps to slow the progression of his condition.

But Risdiplam is not a cure and must be taken long term. It costs around S$4,800 a month now, and is expected to increase to S$12,000 a month as he grows.

Currently, the cost of the therapy is covered by the hospital's Medical Assistance Fund and the Medifund.

But the family maintains that it is a temporary measure that puts Faziq at risk of irreversible muscle loss.

The family said that doctors have recommended Zolgensma, a one-time gene therapy that addresses the root cause of SMA by replacing the missing gene.

Zolgensma is colloquially known as the world's most expensive drug and is priced at S$2,397,300.

It is not subsidised or covered under Singapore's Rare Disease Fund.

On Mar. 26, the family reached its fundraising goal of S$2.4 million, thanks to over 43,000 donors.

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Top photos via Faziq's family & hopeforfaziq/Instagram