Baby with rare disorder passes away during fund-raising effort for his treatment

Singapore — Baby Rayyan Qush was in the news recently as his mother, Ms Nurdiana Rohop, reached out to the public to raise money for his treatment.

Ms Nurdiana had been told at the National University Hospital (NUH) on Nov 6, 2020, that her youngest child had a rare medical condition called spinal muscular atrophy (SMA). It is a genetic neuromuscular disorder that affects the motor neurons near the spinal cord controlling muscle movement.

The single mother of five was informed that, without treatment, Rayyan’s muscles would progressively grow weaker, eventually leading to muscle death.

A fund-raising platform, give.asia, featured Rayyan’s story. It noted: “He will be unable to walk or stand independently and will have trouble feeding and breathing throughout his life. Without treatment, baby Rayyan will have a very difficult, painful and uncertain future.”

After numerous tests and consultations with leading doctors at NUH, Ms Nurdiana was offered an option in the form of the drug zolgensma.

The gene therapy medication could target the cause of SMA. It is, however, touted as the most expensive drug on the market, costing S$3.1 million. Furthermore, the specialised, one-time drug treatment, to be pre-paid and pre-ordered from the United States, needed  to be administered before Rayyan turned two years old.

Ms Nurdiana had until April 2021 to raise the said amount. Through various fund-raising platforms, the family was able to raise S$1.1 million, according to a Dec 30, 2020 update posted in the Wish for Rayyan Facebook page.

It was with “a heavy heart” that the news of his passing was announced on Friday (Jan 1). “We would like to inform the public that our dearest Baby Rayyan has passed on this morning,” wrote the page admin of Wish for Rayyan. “With this, we are stopping all fund-raising activities with immediate effect.”

“We would also appreciate your kind understanding to allow some space for the family to grieve.”

In a more recent update, the page announced on Saturday (Jan 2) at about 2.15 pm that Rayyan’s body was headed to the Pusara Aman Mosque and expected to arrive there at 3 pm. The mosque is located next to a Muslim cemetery.

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Single mother of five hopes to raise S$3.1m for treatment of baby’s rare disorder