Baby In NUH ICU Has Severe Muscle Disease, Parents Raising Funds For S$3 Million Medication

1-Month-Old Diagnosed With Spinal Muscular Atrophy, Requires S$3 Million Treatment

For couples, welcoming their baby into the world is one of the most exciting moments in their lives.

It is also the greatest blessing to see their precious little one be healthy and safe.

Unfortunately, Ms Syahirah Yakub and her husband Mr Nabeel Salim Abdat were shocked to learn that their newborn, one-month-old Zayn, was diagnosed with Type 1 Spinal Muscular Atrophy (SMA). It is a severe form of muscular disease.

If left untreated, most children with Type 1 SMA do not live to see their second birthday.

Now, his parents are hoping to raise funds for Zayn’s only available treatment — a S$3 million prescription gene therapy.

Diagnosed with spinal muscular atrophy on 12 Aug

Zayn Nabeel Abdat, born on 7 Jul, has not been an active baby, reported TODAY. This did not raise any alarms at first, as the couple thought it was normal for a baby not to move a lot.

But on 16 Jul, Ms Syahirah noticed he was snoring and made a wheezing sound. He also had a fever.

Zayn was warded at KK Women’s and Children’s Hospital (KKH). Once his fever subsided, he was sent home.

However, a week later, Zayn’s odd breathing pattern continued. The doctor found that his lack of reflex, such as not reacting when tapped, was also a cause for concern. His appetite also dwindled.

On 12 Aug, his parents brought him to National University Hospital (NUH), where he was warded.

As Mr Nabeel filled in the administration form, Zayn was crying, but a mere 30 seconds later, he became unconscious and stopped breathing.

Nurses performed cardiopulmonary resuscitation (CPR) on the 1-month-old, and he had to be moved to the intensive care unit (ICU). After undergoing a blood test, Zayn was diagnosed with Type 1 SMA.

Disease progressively worsens

Type 1 SMA is a severe genetic condition of the central nervous system. Amongst the four types of SMAs, Type 1 is the most severe and occurs within the first six months of an infant’s life.

Infants with the disease have difficulty swallowing and sucking, among other things. They become more prone to respiratory infections and collapsed lungs as muscles continue to weaken. If untreated, most do not live past 2 years old.

According to TODAY, Zayn is the youngest in Singapore to be diagnosed with Type 1 SMA. Upon hearing the news, Mr Nabeel and Ms Syahirah were devastated.

Since his diagnosis, Zayn’s lungs have collapsed multiple times — he is now intubated at NUH’s ICU. Because of this, his parents have not been able to hold him for a month now.

Doctors told them that Zayn’s only available treatment is Zolgensma — a prescription gene therapy used to treat children under two with SMA.

However, a single dosage of the treatment costs almost S$3 million as it’s dubbed the world’s most expensive drug.

Zayn would also need Risdiplasm, a daily dosage drug, which costs S$15,167.50 per bottle and lasts about 64 days.

Due to Zayn’s condition, he was given Risdiplasm on 20 Aug. However, it is only a temporary treatment. His parents are wishing it will get him strong enough for the Zolgensma treatment.

Crowdfunds for expensive treatment

Mr Nabeel, 30, is a former data centre engineer in the midst of a job change, while 31-year-old Ms Syahirah is a civil servant.

Now, the parents are hoping to raise funds for Zayn’s Zolgensma treatment — their only hope for giving their child the best chance of survival and quality of life to grow up well.

They are crowdfunding the S$3 million needed to purchase the treatment.

At the time of writing, the fundraising page has raised S$543,608.

On the Ray Of Hope website, Ms Syahirah and Mr Nabeel thanked everyone for their prayers, help, and support.

If you would like to follow Zayn’s journey as he battles the disease, you can also check out his Instagram account and Facebook page.

Have news you must share? Get in touch with us via email at news@mustsharenews.com.

Featured image adapted from Ray Of Hope.