BUKIT MERTAJAM: A 17-month-old girl who is suffering from spinal muscular atrophy (SMA) could be saved from being permanently paralysed if funds can be raised to buy the life-saving medicine Zolgensma.
The parents of Reese Tan Rui Xin are trying their best to raise RM9mil for a single dose of a jab that holds the promise of being able to treat their daughter’s severe and rare genetic disorder.
Rachel Chung, 38, and her husband Jason Tan, 47, said their youngest child 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.
“After a full-term pregnancy, I gave birth safely to Reese on July 10, 2021. However, she could only lie on her stomach when she reached the stage where she was supposed to learn to crawl and stand,” said Chung.
She added that Reese then underwent various examinations and was diagnosed with the life-threatening genetic disorder.
"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," said Chung at the One Hope Charity and Welfare office on Tuesday (Dec 13).
Chung and Tan are appealing for the welfare organisation to assist in collecting RM9mil to treat Reese; she is an accountant and Tan is a car engine oil and spare parts salesman.
Both of them have a combined household income of RM16,000 monthly.
The couple has another son, who is five.
Chung said it was impossible for them to bear the exorbitant price of one dose of Zolgensma.
"Information on SMA 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,” said Chung.
"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 €1.9mil (RM9mil) and we cannot afford it,” she added.
She said Reese must get the medication before she turns two, or she may be permanently paralysed.
The condition will also affect her lung function and cause breathing difficulties, which may pose a danger to her.
"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,” she said.
Chung added that the Zolgensma gene therapy is the most suitable treatment for Reese based on the family’s survey and the doctor’s recommendation.
SMA is an autosomal recessive genetic disorder and it is the number one genetic disorder killer of infants under two years old.
The main symptoms of patients are muscle atrophy and weakness all over the body, and the body will gradually lose various motor functions, resulting in breathing and swallowing difficulties and death.
In the general population, about one in every 50 people is a carrier of the disease-causing gene, regardless of gender.
Meanwhile, One Hope Charity and Welfare chairman Datuk Chua Sui Hau said it was the first time they had embarked on efforts to raise a sum as high as RM9mil.
However, he said, the huge amount was not a deterrent and the foundation was resolute in helping Reese.
"Every sen donated will be channelled to Reese's medical expenses. We will not take any commission," he said.
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.
