“We don’t expect her to run or jump like other children. We just hope she can continue to breathe, sit up on her own, and enjoy the simple joys of childhood. We’re willing to be her hands and feet for life.”

Yu Jia Xuan, a 7-year-old girl from Kuching, Sarawak, was diagnosed with Spinal Muscular Atrophy (SMA) Type 2 when she was just 18 months old. Doctors once warned that she might not live past the age of two. But thanks to the unwavering care of her parents, Jia Xuan has defied the odds and continues to fight bravely every day.

She still cannot stand or roll over, yet she persists with her physiotherapy and refuses to give up—driven by her dream of one day sitting up, lifting her head, and even taking her first steps on her own.

Two years ago, Jia Xuan began receiving Spinraza injections, a gene therapy drug that helps slow down the progression of SMA and supports basic respiratory and muscular function. While it is not a cure, the treatment has helped stabilize her condition and improve her quality of life.

At that time, One Hope Charity launched a fundraising campaign and, thanks to the generosity of the public, successfully raised the funds needed to cover her two-year treatment plan. However, Spinraza requires long-term, uninterrupted treatment. Any delays or interruptions could compromise the effectiveness and stability of her condition. In addition to the injections, Jia Xuan also requires ongoing physical and motor rehabilitation therapy to maintain her muscle strength and slow deterioration.

She now urgently needs RM89,000 to continue her treatment, which includes upcoming Spinraza doses, weekly physiotherapy sessions, spinal support equipment, and other essential medical aids. The cost has far exceeded what the family can afford.

【Family Survives by Selling Balloons – Daily Income Not Enough to Cover Medical Costs】

In 2022, the family relocated from Kuching to Kuala Lumpur to access better medical care. They currently live in a rented home, supported by relatives. Her father, Yu Kong Chai (43), sells helium balloons to earn a living, with daily earnings ranging from as little as RM10 to RM300 on good weekends. Her mother, Voon Jian Jian (38), is a full-time caregiver who occasionally helps sell balloons or homemade meat jerky during festive seasons to supplement the household income.

The family has no stable income, no insurance, and now relies solely on dwindling savings and the kindness of relatives to get by.

Despite her physical limitations, Jia Xuan continues to attend weekly hydrotherapy and physiotherapy sessions. She smiles gently, cries bravely, and has never stopped wishing to “live better.”

After conducting a home visit and thorough review, One Hope Charity has officially launched a fundraising campaign to raise the necessary funds for Jia Xuan’s medical and rehabilitation expenses. For inquiries or support, please contact our hotline
04-539 9212 / 016-4192 192 / 019-2322 192 / 018-911 4192