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At five weeks old, Zayn Bin Nabeel Abdat was diagnosed with Spinal Muscular Atrophy (SMA) Type 1.
To raise money for treatment of the rare genetic disorder, Zayn's family has launched a campaign via crowdfunding platform Ray of Hope on Aug. 19.
Rare genetic neuromuscular condition
SMA is a genetic neuromuscular disease that results in worsening muscle weakness and poor muscle tone over time, without appropriate treatment.
It happens to approximately one in 10,000 live births.
According to the National Organisation of Rare Diseases (NORD), SMA is due to a loss of motor neurons—nerve cells that control voluntary muscle movement—in the spinal cord and brain stem, affecting one's ability to swallow, suck, and breathe.
Infants with SMA Type 1 usually display symptoms at birth or within six months of age.
Zayn is already experiencing respiratory problems, and recently had to clear out his right lung that collapsed.
Available treatment costs S$3 million
While there is no known cure for SMA, there are currently three available treatments: Zolgensma, Risdiplam, and Spinraza.
According to Zayn's family, the infant was prescribed with Risdiplam and Zolgensma, the latter being a "one-time gene therapy" often used for children under two years old.
The treatment involves the replacement of the dysfunctional SMN1 gene, which encodes a protein important to maintaining one's motor neurons.
However, it comes with a hefty price tag of about S$3 million.
In a Facebook update on Aug. 18, Zayn's family said that they had eventually decided to order Risdiplam first, an oral drug that is administered daily, due to the "urgency of Zayn's condition".
The drug will arrive in two weeks.
Risdiplam costs roughly S$15,000 per bottle, which lasts around 64 days.
As of Aug. 20, S$218,000 has been raised, with 101 days to go to hit the family's target of about S$3 million.
You can donate to Zayn's crowdfunding campaign page here.
You can also follow the family's Instagram account (@walkwithzayn) and Facebook (@Walk With Zayn) to stay updated on their journey.
Top images via Walk With Zayn/Facebook