Single Mum in S’pore Needs $3.1 Million for Treatment of 1YO Who Could Face Lifelong Paralysis

A single mother with five kids in Singapore is faced with the worst nightmare possible: Watching her 1-year-old son fighting against a rare genetic condition that could lead to lifelong paralysis.

Yet, she can’t give up because there’s still a way to save him, provided she managed to gather $3.1 million.

Before we get into that, here’s what happened.

A Healthy Baby

According to BERITAmediacorp, 1-year-old Rayyan was born a healthy baby.

However, it was when he turned 7 months old that his mother, Ms Nurdiana, noticed something strange.

Whenever Rayyan lied down, he could not lift his head or arms.

She brought Rayyan to the polyclinic and was subsequently referred to the hospital.

Despite going for several sessions, the doctors could not detect any issues with Rayyan’s body.

That was when they recommended for Rayyan to go through a genetic test for rare disorders.

Six months later, after his first sample to America met with an accident, Rayyan and his mum got back the results.

Spinal Muscular Atrophy (SMA)

On 7 Nov 2020, Rayyan, at 13 months old, was diagnosed with Spinal Muscular Atrophy.

The condition causes Rayyan’s muscles to weaken and may lead to paralysis, or even death.

While other children his age were learning to walk, Rayyan had trouble moving or standing on his own two feet.

As time passes, he will find it even harder to move.

On his Instagram account, Ms Nurdiana uploads videos of Rayyan working hard at his physiotherapy exercises to main his muscles as long as possible.

 

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

Zolgensma

Because SMA is a rare condition where only 1 in 6,000 to 10,000 babies worldwide develop, the treatment for the condition is extremely costly as well.

It was reported that there is a one-time gene therapy treatment that Rayyan can go through for his condition: Zolgensma

However, in order to get the treatment, Rayyan’s mother must fork out $3.1 million.

And there’s one more condition: the treatment is only effective when the patient is under 2 years ago.

If they’re older, their body would’ve gotten used to their condition and the treatment would not be effective by then.

Raising Funds

Thus far, Ms Nurdiana has been trying to raise funds for Rayyan’s treatment across various channels.

This includes:

• GoGetFunding
• Give.asia
• Donations to Rayyan’s bank account
• PayNow

She managed to raise over $140,000 so far and has less than a year to raise the remaining $2.96 million.

To make matter worse, she has lesser than the 11 months left.

Complex Procedure

In order to get the treatment, doctors from the US must bring the medicine to Singapore and administer it to Rayyan.

However, before they can do that, the hospital must engage legal services to bring the medication here and approval from the Health Sciences Authority (HSA) must be obtained.

This could take up to four months and the process will only start after she has made her payment.

In other words, she’s only left with six months.

Plan B

If she fails to gather the required money in time, Ms Nurdiana is planning to use the funds raised for Rayyan’s medical needs, which include other therapy and spinal injections.

It’s estimated that he will require around $700,000 for them and needs a follow up every year.

You can follow the Facebook page set up by Ms Nurdiana for updates about Rayyan’s condition here.

Featured Image: Facebook (WISH for Rayyan)