Dua kanak-kanak hidap SMA perlu dana rawatan RM1.04 juta

JAKARTA, 17 AUGUST 2026 —

Rare Gene Therapy Pushes Malaysian Families to Crowdfund RM1.04 Million for Two SMA Children

Muhammad Hadeef Fayyadh Mohd Farhan, 2, from Kuala Nerus, Terengganu, and Muhammad Iman Hafiz Muhammad Syafiq, 5, from Taiping, Perak, each require RM520,000 for the treatment, according to their families. The total cost covers the experimental gene therapy, travel, accommodation, and post-treatment care.

SMA is a progressive neuromuscular disease that weakens muscles, often leading to severe mobility limitations. Type 2 typically manifests in early childhood, with symptoms including delayed motor development, muscle weakness, and loss of previously acquired motor skills.

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Families Sell Food, Liquidate Savings as Costs Soar

Muhammad Syafiq Muhammad Sharipuddin, 35, father of Muhammad Iman, said his son’s condition deteriorated rapidly after doctors initially misdiagnosed his symptoms as delayed gross motor development. Iman underwent physical and occupational therapy for years before genetic testing confirmed SMA Type 2 in 2025.

“My wife and I run a small kuih-muih business, but even selling food daily isn’t enough to cover such a high treatment cost in a short time,” he told reporters. His wife, Nurin Syazleen Atiqa Mohd Supian, 27, has taken on additional work to contribute to the fund.

Meanwhile, Mohd Farhan Azis, 35, father of Muhammad Hadeef, said his son’s mobility declined sharply over the past year. Hadeef, who previously crawled, stood, and climbed furniture normally, now struggles to stand during bath time and can no longer climb chairs.

“He used to be so active, but now he often falls suddenly,” said Mohd Farhan, a supermarket supervisor. His wife, Nur Hidayah Mokhtar, 32, works as a clerk to support the family while they seek funds.

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Charity Steps In with RM100,000 Seed Fund

Datuk Chua Sui Hau, Chairman of One Hope Charity & Welfare, said the organization has pledged RM100,000 as seed funding to kickstart the campaign. Despite the daunting target, he emphasized the charity’s commitment to assisting the families.

“While raising RM1.04 million is challenging, we will continue to mobilize support from the public and corporate sectors,” Chua said. “Every contribution, no matter how small, brings hope to these children and their families.”

The charity has set up donation channels via Public Bank Berhad under the account name One Hope Charity & Welfare (3201428817) and through its website, onehopecharity.org.

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Malaysia’s Healthcare System Grapples with Rare Disease Burden

SMA is classified as a rare disease in Malaysia, with limited local treatment options. Current management focuses on supportive care, including physiotherapy, respiratory support, and nutritional assistance. Gene therapy, such as the one planned for Hadeef and Iman, remains inaccessible in public hospitals due to high costs and regulatory hurdles.

The Ministry of Health has acknowledged the financial strain rare diseases place on families, noting that subsidies and insurance coverage are often insufficient. In 2023, the government introduced the Rare Disease Fund under the Malaysia Healthcare Travel Council (MHTC) to assist patients seeking overseas treatment, but eligibility criteria and funding remain restrictive.

Experts estimate that fewer than 100 SMA cases are diagnosed annually in Malaysia, though underreporting is likely due to diagnostic challenges. The average cost of SMA gene therapy globally ranges between USD 1 million to USD 2 million, making cross-border treatment a viable but financially prohibitive option for most Malaysian families.

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Regional Comparisons: How Neighbours Handle SMA Treatment

Neighbouring countries offer varying degrees of support for rare disease treatments. In Singapore, the government subsidizes gene therapy for SMA under the Medication Assistance Fund (MAF), covering up to 75% of costs for eligible patients. Thailand’s Rare Disease Fund provides partial reimbursement for approved therapies, though waiting lists can stretch beyond a year.

Indonesia, where Hadeef and Iman will receive treatment, has emerged as a regional hub for medical tourism due to its lower costs and proximity. The National Social Security System (BPJS Kesehatan) covers some gene therapies, but out-of-pocket expenses remain significant for uninsured patients.

Malaysian health economists argue that expanding local access to gene therapy could reduce the financial and emotional toll on families. However, high import duties on medical biologics and stringent regulatory approvals delay the introduction of such treatments in public hospitals.

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Public Response: A Race Against Time

Social media has amplified the families’ plea, with hashtags such as #SokongHadeefIman trending on local platforms. Corporate sponsors, including small businesses and NGOs, have pledged donations, while individuals have organized fundraising events, including charity runs and online auctions.

A Kuala Lumpur-based tech company donated RM50,000 after an employee’s child was diagnosed with SMA, highlighting the emotional resonance of the cause. Religious organizations have also stepped in, with mosques and surau collecting donations during Friday prayers.

Despite the outpouring of support, the families remain cautious. “We are grateful for every ringgit, but the pressure is immense,” said Mohd Farhan. “We just want our children to have a chance at a normal life.”

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What’s Next? A Long Road Ahead

If successful, the gene therapy could halt the progression of SMA in Hadeef and Iman, potentially allowing them to regain some motor function. Clinical trials for the treatment, developed by a U.S.-based biotech firm, have shown promising results in improving muscle strength and reducing disease severity in Type 2 patients.

However, the road to recovery will be long. Post-treatment, the boys will require ongoing physiotherapy, nutritional support, and regular medical monitoring. Their families will also need psychological and financial counseling to navigate the challenges ahead.

For now, the focus remains on meeting the RM1.04 million target by August 24. One Hope Charity has set up a 24-hour donation hotline and is coordinating with hospitals in Jakarta to expedite the treatment process once funds are secured.

As the clock ticks, the story of Hadeef and Iman underscores a harsh reality: in Malaysia, where rare diseases are often met with silence, the fight for survival is as much about raising funds as it is about finding hope.

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