Over RM9mil raised for baby with rare genetic disorder

KUALA LUMPUR: More than RM9mil in public donations have been raised to help a 10-month-old baby, Wan Muhammad Naail Wan Aslam, who suffers from a rare disease, spinal muscular atrophy (SMA) Type 1.

The baby’s father, Wan Aslam Zakaria, 30, said the crowdfunding drive was launched through a smart phone application known as Misi Rakyat on April 13, to raise enough funds for his son to get the Zolgensma one-off gene therapy injection, which costs USD$2.1mil (RM9.28mil) to prevent further motor neuron and muscle degeneration.

Expressing his utmost gratitude to Allah, Wan Aslam said he would be forever indebted to those who have donated and helped ensure that the mission to raise funds for his youngest son was accomplished.

"At first, we didn’t think it would be possible to raise that much money, but this unexpected help (crowdfunding drive) made it possible.

"I hope this donation will help Naail get better and that he will grow up like other kids. Hopefully when he grows up, he will do good for others,” he said when contacted by Bernama on Wednesday (May 10).

Wan Aslam said that his son was diagnosed with SMA Type 1 when he was four-month-old, which caused his muscles to degenerate to the point that he had difficulty swallowing, sucking and breathing.

The father of three said he will visit the hospital on Monday to further discuss the gene therapy procedures, and set an appointment for the injection.

"From what I’ve been told, the entire process, from initial consultation to receiving the gene therapy medication you ordered from the US that will take two to three weeks to arrive in Malaysia once payment is made, takes around a month. I will share any updates on my social media accounts,” he said.- Bernama