2 young lives, 2 long roads through treatment

At a hospital in Kuala Lumpur, four-year-old Long Yu Hao is facing a gruelling treatment journey expected to stretch across the next two years.

Hundreds of kilometres away in Kuching, eight-year-old Yu Jia Xuan’s family is confronting a different challenge – finding the money needed to keep her rare genetic condition under control.

Their illnesses are different, as are their circumstances, but both families are facing the same difficult reality: treatment does not end with a hospital visit, and the expenses surrounding long-term care can quickly overwhelm an ordinary household.

This is where generous Malaysians can help ease the families’ burden.

Yu Hao: chemotherapy and a mother carrying on alone

In early September, Yu Hao was diagnosed with T-cell acute lymphoblastic leukaemia after his mother, Lim Eng Yung, noticed unexplained bruises, swelling and small red spots on his body.

Further examinations confirmed the blood cancer. The four-year-old has since undergone more than 10 chemotherapy sessions, and his treatment is expected to continue for at least another two years.

For Lim, the diagnosis meant putting work aside almost immediately. “I used to have a job, but since he was diagnosed I can’t work at all,” she said in a video.

She now accompanies Yu Hao to a hospital in Kuala Lumpur around seven or eight times each month, while also managing the family’s day-to-day needs without a regular income.

The frequent trips from their hometown in Kuantan, Pahang bring their own expenses. “Sometimes we have to stay in a hotel,” Lim revealed.

The family was already coping with loss: Yu Hao’s father died two years ago, while Lim’s own father is also undergoing treatment for colon cancer, leaving her with several layers of worry at once.

Chemotherapy, meanwhile, has taken a toll on Yu Hao’s appetite. Lim said her son often feels nauseated after eating or drinking milk, and may vomit or take only a small amount.

“I’m afraid he will not get enough nutrition or have enough strength to fight his condition,” she said.

One of the hardest parts comes during procedures when Lim is not allowed inside the treatment room. “When they are inserting needles into him, I can only stand outside and listen to him crying loudly, ‘Mummy, mummy, save me.’”

Hearing those words is almost unbearable. “Imagine being a parent and hearing your child say that. And what happens if one day, you really can’t save him? What then?”

Lim now has the support of welfare NGO Persatuan Kebajikan VCare Kuala Muda, which is hoping to raise RM20,000 to help them over the coming year. According to the organisation, as of Nov 10, the family is still RM14,930 short of that target.

The money is intended to cover specialised formula milk, treatment-related expenses, transport for frequent hospital visits, accommodation when Lim cannot remain overnight at the hospital, and part of the family’s household expenses.

If you wish to help Yu Hao, kindly transfer your contribution to Bank Simpanan Nasional (BSN) account 0219 0411 0012 2711 (Persatuan Kebajikan VCare Kuala Muda), using the reference ‘CASE 52’.

For verification and receipt, send your transaction slip to Jeanna Goh at 016-337 2749 or email [email protected].

Find out more about Persatuan Kebajikan VCare Kuala Muda here.

Jia Xuan: keeping her muscles moving

In Batu Kawa, Kuching, Jia Xuan has lived with spinal muscular atrophy (SMA) for most of her life. Her mother, Voon Jian Jian, first noticed that something was wrong when Jia Xuan was about five months old and rarely moved her legs.

At 18 months, medical examinations and blood tests led to a diagnosis of type-2 SMA, a rare genetic condition that progressively weakens muscles and affects movement.

Her parents spent more than a year in peninsular Malaysia searching for treatment options. In 2023, the family eventually secured funding for an injectable treatment, which Jia Xuan received for nearly three years.

That financial assistance ended in May. Following an assessment by doctors at Sarawak General Hospital, Jia Xuan switched to oral medication in September. According to welfare NGO CCEP Foundation, the medicine has to be imported from India and costs more than RM3,000 a month.

The family is now hoping to raise RM150,000 to cover three years of medication. Jia Xuan’s father, Yu Kong Chai, earns a living selling leather bags at a morning market, while her mother cares for her at home.

There are other ongoing costs, too, including specialised milk formula and physiotherapy. Jia Xuan currently attends one-to-one online lessons, undergoes professional physiotherapy once a week, and goes swimming weekly – her favourite activity.

Her mother also helps her exercise every day to maintain as much muscle strength and mobility as possible.

CCEP said Jia Xuan has become stronger and more energetic since changing to the oral medication, with greater freedom of movement in her upper body. The concern now is ensuring that treatment can continue without interruption.

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

For both families, the sums involved are daunting. But behind those figures are simpler hopes: enough nourishment after chemotherapy, enough strength for another swim, and enough financial breathing room for parents to concentrate on getting their children through the next stage of treatment.

To help Jia Xuan, donations can be made directly to CCEP Foundation, RHB Bank account 2621 9300 009 342. Please use the reference ‘Yu Jia Xuan’.

Please send CCEP your transaction slip via WhatsApp. To obtain a receipt, click here.

Learn more about CCEP Foundation here, or contact 03-7955 9999 / 010-279 8849.

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