BUKIT MERTAJAM: The parents of a 17-month-old baby suffering from spinal muscular atrophy (SMA) are at their wits' end trying to raise RM9 million for a single dose of a Zolgensma jab to treat the severe and rare disorder.
Rachel Chung, 38, and her husband, Jason Tan, 47, said their youngest child, Reese Tan Rui Xin, had been suffering from SMA since she was 14 months old.
The mother of two said Reese was unable to crawl, stand or walk, and could only lie down.
"She also has breathing difficulties, is unable to chew food and sometimes requires respiratory assistance.
"She is at risk of losing her life if she is not treated swiftly," she said at the One Hope Charity and Welfare office here today.
Chung and Tan are appealing for the welfare organisation to assist in collecting RM9 million to treat Reese.
Chung, who works as an accountant, and Tan, a car accessories businessman, have a combined household income of RM16,000 monthly.
Chung said it was impossible for them to bear the exorbitant price of one dose of Zolgensma.
"Information on SMA, which is a genetic disease, is scarce. But based on the research done by my husband and I, which included referring to medical experts, we learned about a type of drug called Zolgensma.
"It can be used to treat Reese with just one dose. But this is the world's most expensive drug, as it is priced at €1.9 million (RM9 million) and we cannot afford it.
"For now, we can only bear the costs of medical check-ups and regular treatment. We are in a predicament. We hope the public can help our daughter get this life-saving jab."
One Hope Charity and Welfare chairman Datuk Chua Sui Hau said it was the first time they had embarked on efforts to raise RM9 million, a sum that exceeded their expectations.
However, he said, the huge amount was not a deterrent and that they were resolute in helping Reese.
"Every sen donated will be channelled to Reese's medical expenses. We will not take any commission."
Those who wish to donate can do so via www.onehopecharity.org or the One Hope Charity app. For enquiries, call 016-4192192 and 019-23222192.