One of the sad facts of life is that those who are dealt a bad hand won’t always have the means or opportunity to keep playing until they get something better.
While some of us obsess and worry about minor health issues as adults, there are babies out there who are born with terminal illnesses or diseases that significantly decrease their quality of life.
Take the case of Rayyan Qush, a baby who was born with Spinal Muscular Atrophy (SMA), a genetic neuromuscular disorder.
It results in the loss of motor neurons and progressive muscle wasting.
If left untreated, it will soon make it difficult to eat or even breathe.
Rayyan’s family was on track to raise a large amount of money for his extremely costly treatment, but sadly, the 14-month-old hasn’t made it.
Gross Motor Delay
When Rayyan was around seven months old, his mother suspected something was wrong.
At that age, most babies would be rolling around or even standing for a few seconds, but Rayyan was having trouble lifting his arms and legs.
So Rayyan’s mother shared her observations with a doctor at Rayyan’s routine developmental check-up, and her baby later underwent a series of tests at NUH.
There, she received some shocking news.
Diagnosed at 13 Months
While blood tests and an MRI found nothing, a DNA genetic test determined the cause of Rayyan’s troubles.
A doctor at NUH told Rayyan’s mother that her baby had SMA, a rare disorder found in approximately one in 10,000 births.
The age of onset of these disorders is variable, ranging from the neonatal period to adulthood.
The disease also has different levels of severity, which means some patients might have limited mobility, while others might find it difficult to breathe or eat.
Severity of the disease ranges from zero to four, with zero being the most severe.
14-month-old Rayyan was diagnosed with SMA two.
Those with type 2 SMA usually have trouble walking on their own, but may have a normal life span.
Costly Treatments
While there are no treatments that can reverse the muscle atrophy, some can prevent further loss.
The only issue is that these treatments are incredibly expensive.
One option is life-long medication – a yearly injection into the spine or daily oral medication.
Of course, no parent would mind life-long medication if it increases the quality of life for their child.
However, these treatments would cost around S$700,000 and S$300,000 per year respectively.
The other option is Zolgensma, a gene therapy for children less than 2 years old.
While it’s cheaper in the long run, Rayyan’s parents had to cough up S$3.1 million for it upfront.
Since Rayyan was 14-months-old when diagnosed, his parents had until April 2021 to raise the money.
The treatment is only available in the United States.
The family managed to raise S$1.1 million since 12 Nov, but sadly, Rayyan hasn’t been able to hold on.
Passed Away on 1 Jan
On the morning of the first day of 2021, the 14-month-old passed away.
The heartbreaking news was shared on Rayyan’s fundraising social media page “WISH for Rayyan” at around 3pm on Friday (1 Jan).
As a result, all fundraising activities will stop immediately.
Featured Image: Instagram (wishforrayyan)
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