1-Year-Old Singaporean With Spinal Muscular Atrophy Risks Paralysis As Condition Weakens Muscles
While most mothers eagerly anticipate their young children’s first steps, Ms Nurdiana is grappling with the possibility that her son might face a lifelong paralysis.
Diagnosed with Spinal Muscular Atrophy (SMA) at only 13 months old, little Rayyan Qush struggles to even hold his head up.
His mum, who also has to take care of his 4 older siblings alone in their 2-room rental flat, is doing her best to ensure that her young one stands a good chance at living a normal life.
Diagnosed with condition in early Nov
According to BERITAmediacorp, Rayyan was diagnosed with SMA only recently, on 7 Nov.
Born a healthy baby, he showed no symptoms until he turned 7 months old, when Ms Nurdiana noticed some abnormalities.
Every time he lied facedown, he could neither lift his arms nor head.
Concerned, Ms Nurdiana brought Rayyan to the polyclinic, which then referred them to the National University Hospital (NUH).
Multiple appointments and tests couldn’t determine any issues, so doctors recommended a genetic test for rare disorders.
The process should have been straightforward — send his blood samples to a lab in America, and get the results within a month.
Unfortunately, the first batch was destroyed on the flight there, postponing the results further. It wasn’t until 6 months later that Rayyan finally received his diagnosis.
Condition may eventually lead to paralysis
SMA causes a patient’s muscles to weaken, and Rayyan has been showing clear signs of that. In the interview with BERITAmediacorp, he seemed to constantly be on the verge of falling in his mother’s arms, as he couldn’t control his movements.
Unlike other children his age who are learning to walk, Rayyan struggles to even stand.
His mum says it’s as if he can’t support his own body weight, and can’t apply pressure to his feet.
Over time, his condition may lead to paralysis, and in the worst case scenario, possibly even death.
This is because he needs to move his muscles in order to breathe, and that seems to be growing more difficult with time.
Treatment only effective within a limited window
Since the condition only affects 1 in 6,000 to 10,000 babies worldwide, treatment is considerably costly.
BERITAmediacorp reports that Zolgensma, a one-time gene therapy, is among the most expensive treatments in the world.
Not only will doctors have to bring in the medication from the US, they also have to carry out the treatment before Rayyan turns 2.
After he reaches that age, his body will likely get used to his condition, and the medication may not be effective anymore.
Obtaining medication a complex process
At 13 months old, Rayyan has about 11 months left for this treatment, but Ms Nurdiana has even less time to raise funds considering the complex process to obtain the medication.
Gathering $3.1 million is already a big challenge, but there are other administrative obstacles too.
The hospital will have to seek legal services to bring the medication here, and approval from the Health Sciences Authority (HSA).
Getting the medication could thus take about 4 months, and that’s after Ms Nurdiana makes payment.
She told BERITAmediacorp that there are no subsidies available, since Zolgensma has to be sourced overseas.
As such, the unrelenting single mum has turned to several platforms to raise money:
- GoGetFunding
- Give.asia
- Donations to Rayyan’s bank account
- PayNow
You may click the first 2 links if you wish to contribute online.
Help mum raise funds for treatment
In the last update with BERITAmediacorp, Ms Nurdiana has raised over $140,000.
With time not really on her side, she needs to find another $2.96 million to reach her goal.
Striving towards this huge amount is no doubt challenging, especially for a single mother with 2 other kids in primary school, 1 in K1 and another who is only 2.
But she’s doing her very best and is committed to help her little one.
Should she fail to reach the goal within the timeframe, Ms Nurdiana will channel the funds towards Rayyan’s therapy and other treatments like spinal injections.
That will likely cost around $700,000, and requires annual follow-ups.
Hope Rayyan receives the help he needs
Despite being a tough year, 2020 has shown how much compassion and humanity Singaporeans have towards each other.
Let this be an opportunity for us to continue proving that, and help Rayyan get closer towards receiving the treatment he urgently needs.
Whatever the outcome may be, we hope Ms Nurdiana will remain patient and strong in caring for her child.
We also hope that Rayyan will go on to lead a happy and healthy life with his beloved family.
Featured image adapted from Facebook and Give.asia.
