Singapore Baby’s $3M Donation Breaks New Ground for Ultra‑Costly Life‑Saving Drug

From Despair to Hope: Baby Zayn’s Miracle Mission

Picture this: a five‑month‑old infant, a rare genetic glitch that could shut down his movement, and a cliff‑edge dream of survival. Now, let’s sprinkle a bit of perseverance, a dash of viral fame, and you’ve got an uplifting human story that almost writes itself in a headline.

The Tiny Troubles

• Zayn’s Diagnosis: “Type 1” spinal muscular atrophy (SMA) at about five weeks old.
• What SMA Does: Weak muscles, shaky motor skills, breathing hiccups, back curvature, and a weakened skeleton.
• Life‑Saving Cure: Zolgensma – a one‑time gene therapy that walks straight into a baby’s veins and throws a stop‑sign in the progression of SMA.
• Pricey Purse: Roughly $3 million in Singapore (the world’s most expensive drug, whispering Champions League fame).

The Parents’ Playbook

Meet the dynamic duo: Mr Nabeel Salim Abdat, a 30‑year‑old data centre engineer, and Ms Syahirah Yakub, 31, whose determination could bring down the most stubborn red‑tat‑tack.

1. Step 1: “We needed the cash,” Nabeel recalls. “Fear‑filled dreams became a very heavy bucket.”
2. Step 2: They launched a fundraising avalanche on Ray of Hope in mid‑August.
3. Step 3: Influencers and celebrities waded in, turning the clammy donation pit into a rainbow‑sprinkled stream. Within a month, they hit about 50 % of their goal at best.
4. Step 4: Two months later, the numbers stagnated, a not‑quite‑empty $1.5 million wariness hovering in the air.
5. Step 5: “What’s next?” Nabeel wondered. “Not a lot of ideas left, we felt it.” That’s when the magic gallons poured in.
6. Step 6: “Several large anonymous contributions” came through, and the tally catapulted past $3 million on Nov 4, beating the closing date.

The Big Win

Lo and behold, by early December, Zayn will receive Zolgensma – a one‑off therapy that may just tilt the odds from “dying” to “surviving.” This tiny patient and his parents are essentially turning the story from “eye‑roll” to “tales for grandkids.”

As Nabeel marvels, “It’s like a huge weight off our shoulders.” In truth, it’s more than a weight; it’s the breath of life for a child who once stared at a caption of “turning nothing into something.”

Why This Matters

• It showcases the amazing power of community support and digital platforms.
• It shines a harsh light on the high cost of life‑saving drugs, and the creative ways families fight to hit those numbers.
• It reminds us that when you truly create a narrative that touches people, hope can co‑operate with humor to write a new chapter.

Takeaway

When you’re faced with a seemingly impossible challenge, remember: one can triumph by combining heartfelt storytelling, social media magic, and a sprinkle of bold persistence. Thank you, Zayn, for showing us how to translate a story into action – and a hug of gratitude to everyone cheering on this brave little life.

<img alt="" data-caption="Mr Nabeel Salim Abdat and Ms Syahirah Yakub started a campaign on crowdfunding platform Ray of Hope for Zayn in mid-August.
PHOTO: Syahirah Yakubcrow” data-entity-type=”file” data-entity-uuid=”bb7bb428-118a-4531-80cb-a5d6f6766a37″ src=”/sites/default/files/inline-images/131122_baby_st%20%281%29.jpg”/>

Mr. Nabeel and Ms. Syahirah, the proud parents of Zayn, admit they’re not entirely sure who tipped the scales to help their son reach his goal but they’re thrilled. Yet, the climb will stay steep even after the cutting‑edge drug Zolgensma arrives.

• Zayn is now on the furniture at the National University Hospital.
• He’s been swapped from the very high‑pressure ICU to a less intense high‑dependency unit.
• Let’s be real: he still needs tubes for breathing and feeding.
• And, quite possibly, a daily oral dose of Risdiplam.

One bottle of Risdiplam costs over $15,000 and gives him just 64 days of relief. That’s a hefty price tag for a good dose.

Doctors warned that Zolgensma could trigger liver trouble. In fact, Novartis spooky news in August highlighted two kids in Russia and Kazakhstan who went down after a few weeks of the drug.

Because of that, Zayn may also need a handful of steroids to fight liver failure.

Zayn’s parents say they’ll watch his reaction closely before planning next steps.

• Ms. Syahirah just gave up a civil servant gig to focus on Zayn.
• They’re huge fans of everyone who’ve helped: family, friends, whomever.
• “We’re genuinely moved by the community’s love and support,” Bounces B. Nabeel shared.

All this coming from the Straits Times, who first told the world about Zayn’s saga.