The standard Singaporean dream is relatively simple. Study, get a job, get married, start a family, live happily.
Despite how simple it seems, life doesn’t always flow that easily. That is the case for Nabeel Salim Abdat and his wife Syahirah Yukub.
Just two months ago, the couple had their first child, Zayn Nabeel Abdat. But their celebration was short-lived.
Zayn is the youngest child in Singapore to be diagnosed with Type 1 spinal muscular atrophy, a genetic condition of the central nervous system that affects nerves and muscles, which progressively worsens over time if not treated.
The only treatment for this condition is a S$3 million drug called Zolgensma, a gene therapy prescription, also known as the world’s most expensive drug.
Multiple Admissions and Checks with Doctors Before Getting Diagnosed
When Zayn was first born, his parents noticed how he did not move much but thought nothing of it as he was a newborn and assumed it was normal.
But a week after Syahirah gave birth, she was tested positive for COVID-19. Wanting to be safe, she brought Zayn to KK women’s and Children’s Hospital (KKH) where he was treated for a fever. Thankfully, the child did not test positive for COVID-19.
Soon after Zayn was discharged, Syahirah noticed how her child kept making a “wheezing sound” and brought him back to KKH to be warded.
She was given a nasal spray for Zayn. When Zayn’s condition did not improve after a week, she decided to get a second opinion from a paediatrician, a doctor who specialises in the health of infants, children and adolescents.
At first the doctor thought it was stridor caused by phlegm blocking Zayn’s voice box but he noticed the baby’s lack of reflex so he referred the family to a neurologist at National University Hospital (NUH).
A few days before their appointment at NUH, Zayn’s appetite dropped. He was drinking only 10ml of milk in half an hour, where he would usually consume about 60ml.
They immediately knew something was off and brought their child to the accident and emergency (A&E) unit of NUH. They entered the unit at about 4pm to 5pm but was only warded at 10pm to 11pm.
While Nabeel was filling out the administration form, he heard Zayn cry and 30 seconds later, his child was unconscious and stopped breathing.
The nurses jumped into action and performed CPR on the infant. Zayn was transferred to the intensive care unit (ICU) after resuscitation.
Zayn was only diagnosed with Type 1 spinal muscular atrophy after a blood test on 12 August.
Type 1 Spinal Muscular Atrophy, the Most Severe Form
According to the Nationwide Children’s Hospital in the United States, only 1 in 6,000 babies are born with this disease. Among the different forms of spinal muscular atrophy, Zayn has been diagnosed with the most severe kind, Type 1.
Those with Type 1 generally do not live past two years of age. They will have difficulty swallowing and sucking, which could explain Zayn’s drop in appetite, and their muscles will progressively weaken, making them susceptive to respiratory infections.
Zayn is currently taking Risdiplam, which helps to increase the production of a protein that is lacking in spinal muscular atrophy patients. But this treatment is costly, at S$15,000, and it only lasts for 64 days for Zayn.
His parents have turned to crowdfunding platform, Ray of Hope, to raise funds for Zayn’s treatment. They are aiming to raise enough for Zolgensma, the only one-time treatment available for Zayn, which costs S$3 million.
To date, they have raised S$495,683 which is just under a sixth of their goal.
It has been over a month since the new parents has held their newborn child. They currently stay in a room at the hospital and spend their days looking at Zayn in his ward.
Visit Ray of Hope’s website to contribute in raising funds for Zayn.
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Featured Image: Ray of Hope
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