Regene Tan Sze Nee, a 6-year-old girl from Selangor, has been battling a rare disease since birth. Though dearly loved by her parents, her life took a drastic turn just months after she was born. For the first three months, Sze Nee developed well — she was active and even learned to roll over earlier than most babies. However, at just five months old, her parents noticed that her limbs were weakening, and she could no longer move like other babies. Worry quickly set in.

At first, her condition was thought to be a minor developmental delay, but as it continued to worsen, Sze Nee was diagnosed with Spinal Muscular Atrophy (SMA) Type 2 a rare neuromuscular disorder that causes the progressive weakening and wasting of muscles.

Determined to help their daughter, her parents sought treatment at University Malaya Medical Centre (UMMC), where Sze Nee was fortunate to receive a free genetic therapy drug. While the drug slows the progression of the disease, it is not a cure. Doctors emphasized that ongoing rehabilitation is essential to preserve her motor functions without it, she could eventually lose her ability to hold her head up, swallow, or even breathe independently.

【Due to limited hospital resources, she could only receive physiotherapy once every two months, far from adequate which led to severe muscle atrophy】

Because of the strained resources in public hospitals, Sze Nee could only undergo physiotherapy once every two months. This low frequency was insufficient and resulted in severe muscle atrophy, causing her legs to deform and remain unstraightened. Upon her doctor’s advice, her parents turned to a specialized rehabilitation centre for children with neurological conditions.

Despite the high cost, they persisted with treatment. After six months of intensive rehab, Sze Nee made notable progress — she can now hold her head upright, sit with stability, and has improved hand-grasping ability. She is also preparing to begin her first medication-assisted therapy. Doctors have repeatedly stressed that consistent rehabilitation is crucial to prevent regression.

Sze Nee also suffers from scoliosis and must wear a back brace full-time. At this stage, surgery is not suitable. Her immune system is also weak. In 2023, she was hospitalized for a serious lung infection and now relies on a breathing machine every night at home to help her breathe.

Her father, Tan Kien Hong (42), gave up his job several years ago to become her full-time caregiver, looking after Sze Nee and their two other young children. Her mother, Foo Pei Chie (37), works as a software admin officer and is now the sole breadwinner. However, her income is not enough to cover the family’s growing medical and daily living expenses. The couple has long depleted their savings and now depends on credit cards just to get by.

After conducting a thorough home visit and assessment, One Hope Charity has decided to launch a fundraising campaign to help Sze Nee. The funds will be used to support one year’s worth of her rehabilitation and medication expenses. One Hope Charity will also contribute RM10,000 from its Emergency Medical & Contingency Reserve Fund to kickstart the campaign.

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