描述

Kuching: a eight-year-old girl Yu Jia Xuan has been diagnosed with Spinal Muscular Atrophy (SMA), a rare genetic condition that affects muscle strength and movement. She needs long-term medication to slow the progression of the disease. However, the high cost of treatment is beyond her family’s financial means.

Her parents are appealing to the public to help raise RM150,000 to cover her medication expenses over the next three years.

After learning about Jia Xuan’s medical condition and family circumstances, CCEP Foundation has stepped forward to help raise the required funds, hoping to ensure that she can continue receiving treatment without interruption.

Jia Xuan lives with her parents in Batu Kawa, Kuching, she is the only child in the family. Her 44-year-old father, Yu Kong Chai, is a morning market trader selling leather bags, while her 39-year-old mother, Voon Jian Jian, is a housewife.

According to her mother, Jia Xuan’s condition was first noticed when she was five months old, as she rarely moved her legs. At 18 months, after undergoing medical examinations and blood tests, she was diagnosed with Type 2 Spinal Muscular Atrophy.

Determined to find treatment for their daughter, her parents took her to West Malaysia to seek medical help. They even tried to secure a place in a clinical drug trial, hoping to give her a chance at treatment, but their efforts were unsuccessful.

At that time, they were told that there was no available treatment for the condition. Unsure where else to turn, the family remained in West Malaysia for more than a year, trying to make a living while searching for medical help.

Their situation took a turn in 2023 when they learned that the Malaysian Ministry of Health had introduced an injectable medication from the United States to help manage SMA.

Although the treatment was very expensive, a charitable foundation stepped in to organise a fundraising campaign after the family was referred by another SMA patient’s family. The campaign successfully raised enough money to cover three years of treatment.

Jia Xuan began receiving the injections in July 2023, becoming the first SMA patient in Malaysia to receive this particular injectable treatment.

However, the financial assistance ended in May this year, leaving her parents struggling to find a way to continue her treatment.

Her parents were subsequently advised to consider switching to oral medication to manage her condition.

Following an assessment and recommendation by doctors at Sarawak General Hospital, Jia Xuan switched to oral medication in September this year. The medicine has to be imported from India and costs more than RM3,000 a month.

This amount does not include her specialised milk formula, physiotherapy sessions and online learning expenses, placing further pressure on the family’s limited income.

Her mother shared that Jia Xuan is currently able to move her upper body freely. Since switching to oral medication, she has also become stronger and more energetic.

As she has reached school age, Jia Xuan currently attends one-to-one online lessons from home. She also undergoes professional physiotherapy once a week and goes swimming weekly. Her mother accompanies her in daily exercises to help maintain and improve her muscle strength and mobility.

Despite her condition, Jia Xuan remains cheerful and lively. During the interview, she happily shared that swimming is her favourite activity.

With the high cost of medication every month, her parents are increasingly worried about how they can continue paying for her treatment. Having exhausted their options, they have turned to CCEP Foundation for help in raising the necessary funds so that Jia Xuan can continue her medication and keep her condition under control.

CCEP Foundation Chief Executive Officer Yvonne Yee said SMA is a condition that currently has no definitive cure. Patients need long-term medication to slow disease progression, but the treatment is extremely costly and beyond the reach of many ordinary families.

She said she understood the pain and helplessness parents experience when they see their child’s condition worsen but lack the financial means to provide the necessary treatment.

“Every parent wants to see their child grow up healthy and happy. Jia Xuan, too, hopes to get better and continue enjoying her learning journey,” she said.

Yvonne added that Jia Xuan’s father earns a living as a small trader, and making ends meet is already a challenge amid the current economic climate. Raising RM150,000 for medical expenses is an enormous burden for the family.

CCEP Foundation is therefore appealing to the public for support and donations to help Jia Xuan continue her medication and prevent her condition from worsening.

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