Last Updated on 2022-11-15 , 3:25 pm
Everyone knows that the cost of living in Singapore is ridiculously high.
To quantify it, raising a child till 18 years of age would set you back a cool quarter million dollars, and that number is only getting higher.
For one unfortunate couple, they have a few million more on their tab, but the nation’s got their back.
Boy Diagnosed with Rare Genetic Disorder
When he was only five weeks old, the now 5-month old baby Zayn had been diagnosed with Type 1 spinal muscular atrophy (SMA), which confronted him with immobilisation and even fatality.
Those diagnosed with SMA experience loss of muscle control, movement, and strength. Also, patients might suffer from respiratory problems, scoliosis, and osteoporosis.
This neuromuscular genetic condition affects one in 10,000 children, and most diagnosed with it do not live past the age of two.
In other words, Zayn was born with an expiry date on his life.
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Facing the Cost of Treatment
To be treated, his parents would need to acquire the drug Zolgensma. Unfortunately, the drug does not come cheap.
Zolgensma is established as the most expensive drug in the world, costing close to $3 million. It is a single-time gene therapy that is infused into the baby’s veins to halt the condition’s growth.
Zayn’s parents, Mr Nabeel Salim Abdat and Ms Syahirah Yakub, faced with this boulder, turned to the public for help. In mid-August 2022, they started a crowdfunding campaign on the platform Ray of Hope.
In the first two months of the campaign, support rushed in quickly with the help of influencers and celebrities shining light on it.
However, the amount slowly stagnated just under $1.5 million, half of what they had to raise, leaving Mr Nabeel and Ms Syahirah desperate and uncertain.
In a surprising update from Ray of Hope on 4 November, “several large anonymous donations” had been made which allowed the campaign to garner a total of $3,015,167.50 before its closing date at the end of November.
Phew.
The good in our society has given baby Zayn a new lease of life.
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“It’s like a huge weight off our shoulders,” Mr Nabeel said.
Passing Future Hurdles
If you thought the story ended there, I regret to inform you that it doesn’t.
Apart from the one-time Zolgensma therapy, Zayn may have to continue taking the oral medication Risdiplam daily, with each bottle of it costing upwards of $15,000 and lasting only 64 days. Adding on, he may have to treat a side effect of Zolgensma, liver failure, by taking steroids.
Ms Syahriah has quit working as a civil servant to take care of her child, leaving Mr Nabeel to be the sole breadwinner.
The couple announced that they will monitor Zayn’s response to the drug and then act accordingly instead of making decisions now. They are immensely grateful to everyone’s support in both the financial and emotional aspect.
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Featured Image: Ray of Hope
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