S’porean single mum trying to raise S$3.1m for special drug to treat baby’s rare, paralysing disorder

Stories of Us: Nurdiana Rohop's 14 month old baby Rayyan suffers from an irreversible disorder called Spinal Muscular Atrophy. His progressive muscle-weakening can be stabilised with a S$3.1 million treatment.

Andrew Koay | December 25, 2020, 04:57 PM

"It felt like a lorry just hit me — hit my heart."

That's how Nurdiana Rohop, or Diana as she is known to friends, remembered the moment when she first heard about her son Rayyan's diagnosis.

A doctor at the National University Hospital (NUH) had just told the single mother of five that her 13-month-old baby was suffering from Spinal Muscular Atrophy (SMA), a genetic neuromuscular disorder.

If left untreated, Rayyan's muscles will progressively weaken to the point of paralysis; eventually even eating and breathing might become impossible without aid.

"It's like a slow death, that's how I would describe it," Diana said to me.

The 32-year-old flashed a pained smile.

Courage and hoping beyond hope

For Diana, the last half a year of her life has been an exercise of courage and hoping beyond hope.

"I suspected something was wrong because of his delayed gross motor skills at about seven months," she said.

Image from Wish for Rayyan's Facebook page

While most babies at the same age of Rayyan would have been able to roll or stand for a few seconds, Diana's youngest child was having problems lifting his arms or his legs.

Though he was already seven months old, his movements seemed more akin to that of a one-month-old newborn.

Sharing her concerns with her doctor at Rayyan's routine developmental check-up triggered a referral to NUH where the baby underwent a variety of tests.

"We did all the normal things, the blood test, the MRI, but they couldn't find anything.

So they suggested genetic testing, DNA genetic testing. That is when we found a diagnosis."

Spinal Muscular Atrophy

According to the National Organisation for Rare Diseases, SMA is a disorder found in approximately one in 10,000 births.

Those affected may experience the onset of the disorder at different stages of their lives and symptoms may vary from having trouble walking downstairs to total respiratory failure, depending on the severity of the disorder.

View this post on Instagram

A post shared by WISH for RAYYAN @xodeerohop (@wishforrayyan)

Rayyan was diagnosed with SMA two; severity ranges from zero to four, zero being the most severe and four being the least.

Onset for those with SMA two typically occurs between six to 12 months of age and by the time the child is in their mid-teens, they will be unable to sit independently.

For Rayyan and Diana, there are currently three different treatments they could pursue. None can actually reverse any of the muscle-weakening that Rayyan experience, though they can stabilise his condition and prevent further loss.

The first two, involve taking life-long medication — either a yearly injection into Rayyan's spine or daily oral medication.

Diana said they would cost around S$700,000 and S$300,000 per year respectively.

The remaining option is the most immediately costly, though it only has to be administered once — Zolgensma, a form of gene therapy that targets the cause of SMA.

But here's the catch: Zolgensma can only be administered to children under the age of two.

At the time of writing, Rayyan is 14 and a half months old.

Diana explained that this left her until April 2021, to raise the S$3.1 million (it was described in 2019 by NPR as the most expensive drug ever made) that would be needed to pay for Zolgensma, as the treatment is only available in the United States and would have to be flown in.

Since starting their efforts on Nov. 12, the family have raised S$940,000 across various fundraising platforms, fueled by social media virality and media coverage.

Yet, raising the remaining sum will continue to be a gargantuan task.

"Keep smiling"

"Of course I'm hopeful," said Diana.

She explained that part of her determination to give Rayyan the best chance at a normal life came from a previous experience of losing her daughter to sudden infant death syndrome.

"It makes it even harder to believe this. I can't believe that I lost a daughter before and now again this is happening.

It's just hard for me."

As her voice trailed off, I could see inklings of fatigue beginning to show from behind Diana's generally upbeat demeanour.

Rayyan's condition and the desperate scramble to find a viable treatment had no doubt been taxing on the mother of five.

She spoke of the support she'd received from other parents whose children also had SMA.

There were also her other four sons, the eldest aged 10, who she called her pillar of strength.

Image from Wish for Rayyan's Instagram page

A recent family meeting, where she explained to the boys what Rayyan was going through, ended in tears.

"We had a small family hug. They cried more than me. I want them to lower their expectations, because they are expecting him to crawl and to walk."

In the early hours of Dec. 24, a video was posted to the fundraising campaign's Instagram page, which showed Rayyan smiling while Diana held him.

View this post on Instagram

A post shared by WISH for RAYYAN @xodeerohop (@wishforrayyan)

"Keep smiling, dear Rayyan. You're stronger than you think you are," read the video's description.

It's a statement that would apply wholly to Diana too.

Those wishing to donate to Diana and Rayyan can do so here.

You can keep up to date on Rayyan's condition through the fundraising campaign's Facebook and Instagram pages.

Stories of Us is a series about ordinary people in Singapore and the unique ways they’re living their lives. Be it breaking away from conventions, pursuing an atypical passion, or the struggles they are facing, these stories remind us both of our individual uniqueness and our collective humanity.

Top image from Wish for Rayyan's Facebook page

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