PETALING JAYA: More than RM9 million has been collected through crowdfunding to assist 10-month-old baby Wan Naail Wan Aslam, who suffers from a rare medical condition – spinal muscular atrophy (SMA) Type 1.
The boy’s father, 30-year-old Wan Aslam Zakaria, said the fund launched through Misi Rakyat on April 13 was to ensure that his child would be able to receive the once-in-a-lifetime injection of the Zolgensma gene therapy, costing US$2.1 million (RM9.28 million).
Bernama said the treatment could arrest the muscular atrophy process.
Wan Aslam thanked his funders as he was now able to pay for the treatment for his youngest child.
“Earlier, we thought it would be impossible to reach the RM9 million target. We’re just ordinary citizens who cannot afford such expensive treatment.
“We can’t believe that we’ve collected the desired amount.
“I hope the treatment will heal Naail and he has the chance to grow up like other children.
“Hopefully, when he grows up, he will be of great benefit to society.”
A video went viral on social media earlier today, showcasing the NGO Misi Rakyat’s success in organising the crowdfunding and collecting RM9,088,404.
The boy was found to suffer from SMA Type 1 when he was just four months old. His muscles deteriorated to the extent that it was difficult for him to swallow his own saliva.
He also needed breathing assistance and a machine to suck out his phlegm. He could only drink milk through a tube, running through his nose.
Currently, Wan Naail is being treated with Risdiplam, which costs RM40,400 a bottle.
He requires a bottle of the medication each month to reduce his muscular atrophy until enough funds have been collected to purchase the Zolgensma gene therapy, which must be injected before he turns two.
Wan Aslam will be meeting hospital authorities on Monday to find out more regarding the new procedure as well as getting information on the date of the injection.
“Right now, I’ve been told that the procedure, before the injection, will take a month.
“This includes ordering the Zolgensma gene therapy medicine from the US. This will take two to three weeks to arrive in Malaysia after payment has been made.
“I’ll update the latest information on my social media,” he said. - FMT
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