A 32-year-old Singaporean woman is seeking to raise S$3.1 million for the treatment of her one-year-old son suffering from spinal muscular atrophy (SMA) before her son’s second birthday.
It was reported by Mothership that Nurdiana Rohop, a single mother of five, recently found out that her youngest son, 13-month-old Rayyan, was diagnosed with the rare genetic neuromuscular disorder that results in the loss of motor neurons in the spinal cord.
Without treatment, Rayyan may suffer from progressive muscle weakness, which will lead to paralysis, where he cannot eat and breathe without aid.
Ms Nurdiana told Mothership that when Rayyan was seven months old, she noticed something was wrong because of his delayed motor skills.
She found her son had difficulty lifting his arms or his legs and that his movements “seemed more akin to that of a one-month-old newborn” despite the fact that seven-month-old babies would have been able to roll or stand at least for a few seconds.
Concerned about Rayyan’s condition, she then shared the issue with a doctor during his son’s routine developmental check-up, which prompted the doctor to refer them to NUH where Rayyan underwent a variety of tests.
“We did all the normal things, the blood test, the MRI, but they couldn’t find anything. So they suggested genetic testing, DNA genetic testing. That is when we found a diagnosis,” Mothership reported Ms Nurdiana as saying.
Ms Nurdiana said that she could pursue three different treatments for his son, but the first two –- a yearly injection into Rayyan’s spine or daily oral medication –- would cost around S$700,000 and S$300,000 per year respectively.
The third option, known as Zolgensma — a gene therapy designed to treat children under two — is also one of the most expensive treatments in the world, even though it is only given as a one-time infusion.
Given that the treatment is only available in the United States, it thus would have to be flown in.
By doing so, Ms Nurdiana would need to raise S$3.1 million by April next year to pay for the treatment, so that the treatment can be carried out before Rayyan turns two.
Part of her determination to give her son the best chance at a normal life, she told Mothership, is due to her previous experience of losing a daughter to sudden infant syndrome.
“It makes it even harder to believe this. I can’t believe that I lost a daughter before and now again this is happening. It’s just hard for me,” she said.
In a recent family meeting, Ms Nurdiana also explained the Rayyan’s condition to her other four sons, in which the eldest aged 10 has been her pillar of strength.
Netizens hope Govt to offer assistance
Upon reading the news, many netizens expressed sympathy toward Ms Nurdiana and Rayyan on the Facebook page of Mothership.
Some of them hoped that the Government could offer their assistance to this family, as the amount of S$3.1million is difficult to raise amid COVID-19 pandemic, where many people have faced a loss of income and jobs.
A few netizens wondered why the “medical cost has to be this huge” and that many people “work a lifetime” would not be able to earn the amount.
On the other hand, several netizens came forward to urge the people should refrain from commenting negatively, and should not use “the suffering of others for your political points”.
A netizen, believed to be Ms Nurdiana’s sister, criticised those who left negative comments.
“I would appreciate if you have nothing to say, keep quiet. I have seen her low and high. She is trying her best to give her son what he needs.”