Singapore — A single mother of five has been told that her youngest child has a rare medical condition and that hope lay in a drug that costs S$3.1 million.
On Nov 6, 2020, Ms Nurdiana Rohop, 32, received news from a National University Hospital (NUH) doctor that her 13-month-old son was suffering from spinal muscular atrophy (SMA), a genetic neuromuscular disorder. Their story is a featured campaign at give.asia, a fund-raising community geared at helping those fighting for their lives.
The baby, Rayyan Qush, is the youngest of her children. He was diagnosed with Type 2 SMA, which is a rare genetic condition affecting the motor neurons near the spinal cord to control muscle movement.
“I suspected something was wrong because of his delayed gross motor skills at about seven months,” said Ms Nurdiana in a mothership.sg report. Rayyan had difficulty lifting his arms or legs while most babies at this age should be able to roll or begin to stand.
“Every parent want the best for their children. When I received Rayyan’s diagnosis, I was in anguish and at a loss. Who would’ve thought my chubby bubbly baby has SMA. At least I didn’t. All sorts of fear struck me, including how I would break the news to his elder brothers about his condition. After losing a daughter six years back, the thought of losing another is unbearable much less watching him fade day by day with so many uncertainties,” said the mother in a Facebook post.
Ms Nurdiana was informed that, without treatment, Rayyan’s muscles would progressively grow weaker, eventually leading to muscle death.
“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,” noted give.asia.
However, Ms Nurdiana is not losing hope in finding the best treatment for her son. After numerous tests and consultations with leading doctors at NUH, she was offered an option in the form of the drug zolgensma.
This gene therapy medication could target the cause of SMA. It is touted as the most expensive drug on the market, costing S$3.1 million. Furthermore, the specialised, one-time drug treatment that needs to be pre-paid and pre-ordered from the United States, needs to be administered before Rayyan turns two years old.
Ms Nurdiana has until April 2021 to raise the said amount.
“She realises that it is a huge amount for her to fund-raise, but she is hoping to trust the kindness of families and strangers, to have faith in humanity, to seek sympathy and empathy to save her little boy,” noted give.asia.
To date, more than S$127,500 has been raised through give.asia. The family is also accepting donations through gogetfunding.com, which currently has around S$319,800 in donations.
Blogger and retired actor Nick Mikhail is holding a fund-raising event on Sunday (Dec 27) for Ms Nurdiana and Rayyan. It will be a six-hour online marathon until midnight via his Facebook page showcasing comedians, other artistes, bloggers and influencers. /TISG