'We didn't know': Parents of 9-month-old baby with rare disease seek S$2.4 million cure

Baby Faziq is nine months old.

He has two older siblings, aged seven and 11, a brother and a sister. They're very close.

He just celebrated his very first Hari Raya. They went to Batam over the weekend. (He threw up on the ferry, his mother, Norhaziqah, tells me.)

Baby Faziq likes watching Ms Rachel and playing ball with his siblings. He speeds around the living room in his little walker, bumping into the TV console and his mother's shins with joyful abandon.

To my eye, he looks like any ordinary, happy baby.

But he also suffers from a rare genetic disease: Spinal Muscular Atrophy (SMA).

About SMA

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

It's a bit like having a ticking time bomb in your body.

The disease makes the muscles weaken over time. And once symptoms begin, they are irreversible and incurable.

Often, SMA, left untreated, leads to premature death.

It's what happened to Faziq's older brother, Faris.

Baby Faris was born in 2016, the couple's second child.

He was diagnosed with SMA at around eight months old.

Back then, there were no approved treatments for SMA in Singapore.

Despite the doctors' best efforts, Faris passed away before he turned six.

Didn't know

Norhaziqah says the couple didn't realise Faris's disease was genetic.

"We thought it was only by chance," she tells me. A rare disease, one in thousands. No one told them otherwise.

They had a third child, a daughter — Fasha — who is happy, healthy, and in Primary 2 this year.

Then she became pregnant with Faziq.

It was during a prenatal screening in her second trimester when the doctors saw that little Faziq had SMA as well. The couple was devastated.

"We didn't know," she says softly. She and her husband hadn't realised they were carriers of the gene, so they didn't get tested for it.

"Maybe that was my mistake."

After the diagnosis, the medical team gave them a choice. To abort Faziq, or keep the child.

But she could already see his little features in the ultrasound. His little face.

"As a mother, you just... you just cannot," she tells me.

"How can I have the heart to abort my child?"

A ray of hope

There is one difference between Faris's and Faziq's cases.

Now, there are not one but two approved treatments for SMA in Singapore.

The Health Sciences Authority (HSA) approved Risdiplam, an oral medication, in 2021.

They approved Zolgensma two years later, in April 2023.

There are some differences between the treatments.

SMA is caused by a genetic defect in the SMN1 gene. Risdiplam, instead, targets a similar SMN2 gene.

It doesn't stop the onset of illness, only slows it down, and must be taken throughout one's life.

But it is subsidised by the government.

Whereas Zolgensma is a one-time gene therapy that replaces the faulty gene entirely. Once administered, it stops disease progression entirely.

This also means that it must be taken as early as possible, before symptoms set in, to be maximally effective.

Baby Faziq is at an ideal stage for this. He's still mostly asymptomatic, likely due to having been on Risdiplam since birth.

The problem: Zolgensma costs S$2.4 million per dose. And it's not subsidised by the government.

Fighting for life

When Norhaziqah goes to get the Risdiplam for Baby Faziq's daily dose, I speak to his sister, Fasha.

Throughout the interview, she hugs and cuddles him. She snacks on Ferrero Rocher chocolates, then giggles when he snatches one from her and tries to stuff it into his mouth. (It's promptly extracted by Norhaziqah.)

"Ferrerro Rocher monster," she calls him, as he gurgles happily back at her.

Fasha still remembers her late older brother. When I ask what he was like, she fetches me a little booklet of photos and notes from the hospital staff.

"He died when he was six years old," she informs me. "I was four years old."

While their mother feeds Faziq the medicine, Fasha runs to get tissues to wipe Faziq's mouth.

Later, she puts the medication bottle back in the fridge as her brother chews on his syringe.

I ask Fasha what Faziq is like. "He's very naughty. Every time at the bed, he likes to climb," she says.

She later carefully folds her Ferrero Rocher wrapper and gives it to him. He receives it with as much delight as though it were real gold.

Watching the active, mischievous baby in front of me, it is impossible to imagine a future in which he's not laughing, crawling, and getting into trouble.

But I remember that Norhaziqah, and Fasha, have already seen it once before.

The deterioration, the weakness. The end.

Raising funds

Baby Faziq has about 37 more days to raise enough funds for the drug.

If they fail to meet their fundraising goal, all the money will be returned to the donors. It will be the end of the Zolgensma journey. 

How will they celebrate if they do meet it? I ask. Norhaziqah pauses, then shakes her head.

"I can't even think of it yet," she admits. "You still can't think of the happy moments. The worry is more."

There isn't a plan B for Faziq. Even Zolgensma can't cure symptoms once they begin to set in.

And it is only a matter of time.

When I spoke to her, Faziq had raised around S$900,000 of the S$2.4 million goal. Over 13,000 have donated. There is still slightly over half left to go. (At the time of writing, S$1,316,589 had been raised with over 19,000 donors)

"I'm not really hoping, but at least, I give him the chance to try," she says.

She puts Baby Faziq in his walker, tells me that he'll "run around the house". "You must be careful of him," she warns, but she's smiling.

What a joyful concern to have. What a terrifying prospect that it may not last.

I hope with all my heart it does.

If you'd like to donate to Baby Faziq, you can do so here.

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Top image from Faziq's family and Mothership