Singapore parents raise S$2.4 million in 10 days to fund gene therapy for baby with SMA

A crowdfunding appeal for a five-month-old Singaporean baby diagnosed with a severe and rare genetic condition has raised S$2.4 million in 10 days, with her parents confirming on 21 March 2026 that treatment coordination with the hospital has begun.

Baby Ginny was diagnosed with Spinal Muscular Atrophy (SMA) Type 1, the most severe form of a genetic disease that progressively destroys the motor neurons controlling muscle movement. Without treatment, children with the condition typically do not survive beyond early childhood.

The fundraising campaign was launched on 12 March 2026 through Ray of Hope, a Singapore-based crowdfunding platform. By the evening of 22 March, 35561 donors had collectively met the S$2.4 million target.

Ginny's parents, Jenny and Quan, announced the milestone at 10pm on 21 March. "If all goes smoothly, Ginny will be able to start her therapy in the coming weeks," they wrote in a public update.

Treatment and urgency

The treatment being sought is Zolgensma, a prescription gene-replacement therapy that addresses the underlying genetic cause of SMA. It is administered as a single dose and has been described in media reports as among the world's most expensive drugs.

Children who receive the therapy early have, in documented cases, been able to sit, crawl, walk and breathe independently. The drug is not covered by insurance or government subsidies in Singapore.

The urgency of the appeal was underscored by the progressive nature of SMA. Every day without treatment results in the permanent loss of additional motor neurons, which cannot regenerate once destroyed.

Ginny's diagnosis was confirmed at five months old, following a DNA genetic test. Her parents had raised concerns with doctors for weeks prior, after noticing she could not lift or turn her head and that her legs showed minimal movement.

ICU admission and deterioration

At three to four months old, Ginny was admitted to the intensive care unit after developing pneumonia. Her parents observed that she had lost additional muscle strength following the hospitalisation.

She was subsequently unable to clear phlegm from her lungs without assistance and experienced difficulty feeding due to an ineffective cough reflex.

Her parents described watching Ginny struggle to breathe as "something no parent is prepared for," and noted that answers from medical professionals were slow to come during the weeks preceding the formal diagnosis.

Community response

Jenny and Quan expressed gratitude to donors in their 21 March update. "Many of you went above and beyond — sharing Ginny's story, reaching out to your communities, and standing alongside us in hope," they wrote.

"Every donation, every message, and every share has made a real difference. You've helped bring Ginny one step closer to receiving the timely treatment she needs, and that means more to us than we can ever fully express."

Speaking to Mothership, the couple said: "Your support has given Ginny the chance at the best possible outcomes in her life ahead."

The couple stated they would continue sharing updates on Ginny's recovery on Instagram, where the campaign maintained a presence under the handle @hopeforbabyginny.

Next steps

Jenny and Quan confirmed that they have commenced coordination with the hospital and that their immediate priority is to maintain Ginny's health ahead of the therapy.

Ray of Hope had previously noted that in the event funds fell short of the Zolgensma target, all monies raised would be directed towards Ginny's other medical expenses and physiotherapy. With the full amount now secured, that contingency is no longer applicable.

The couple also encouraged donors to consider supporting other campaigns listed on the Ray of Hope platform, which they described as "a great partner."

Singapore's policy framework for SMA treatment

Parliamentary records show that Singapore's approach to SMA treatment has been subject to repeated legislative scrutiny over recent years.

In a written answer to parliament on 22 March 2023, Health Minister Ong Ye Kung stated that approximately 40 to 50 persons in Singapore were then diagnosed with SMA. He confirmed that risdiplam — an oral medication — was at that time the only treatment registered with and approved by the Health Sciences Authority (HSA) for SMA. Its cost was stated to be approximately S$375,000 per year in public healthcare institutions.

Risdiplam operates differently from Zolgensma. It is a daily oral therapy that manages the condition by modifying how the body processes a defective gene. It does not replace the gene or halt the disease at source. Zolgensma, by contrast, is a one-time gene-replacement therapy.

In a further written answer to parliament on 2 July 2024, Ong confirmed that the Drug Advisory Committee (DAC) had recommended risdiplam for inclusion in the Medication Assistance Fund (MAF) from 1 August 2024. Eligible patients in public healthcare institutions became entitled to subsidies of up to 75 per cent on the annual cost. Patients facing residual affordability concerns were directed to apply for MediFund through medical social workers.

Ong noted that DAC makes evidence-based recommendations to the Ministry of Health (MOH) three to four times a year, based on considerations including clinical need, clinical and cost-effectiveness, and budget impact. He confirmed that MOH had accepted all DAC recommendations to date.

Zolgensma has not been registered by the HSA and therefore falls outside both the standard subsidy framework and the MAF.

The Rare Diseases Fund and its limitations

A separate financing channel — the Rare Diseases Fund (RDF) — was raised in parliament on 22 November 2023, when Nominated Member of Parliament Ong Hua Han asked whether risdiplam could be included in the fund.

Senior Parliamentary Secretary to the Minister for Health Rahayu Mahzam, responding on behalf of the minister, explained that the RDF is a charity fund under which the government matches donations at a three-to-one ratio. It is managed by the RDF Committee (RDFC), comprising community representatives advised by a panel of medical experts.

As of November 2023, the RDF had listed seven treatments covering five conditions, covering cases where the fund's investment income was sufficient to support all known patients requiring the same treatment. Since November 2022, the fund had received and supported applications from eight patients.

Rahayu noted that the RDF had expanded to cover Cell, Tissue and Gene Therapy Products (CTGTPs) — a category that includes Zolgensma — and that the RDFC would communicate with new donors about this expansion.

On a supplementary question from Ong Hua Han regarding whether the RDF's eligibility criteria could be broadened to include medicines that enhance quality of life even where life extension had not been evidenced, Rahayu stated that the expert panel of senior doctors with experience in rare disease management was responsible for determining which medicines and conditions were covered. She reiterated that medicines could only be listed if sufficient investment income existed to support all known patients for that treatment, describing this as one of the structural limitations of the fund.

Rahayu also confirmed that MOH would separately review the clinical and cost-effectiveness of SMA treatments for inclusion in subsidy and mainstream financing frameworks.

ACE rejection of Zolgensma for public subsidy

In September 2025, the Agency for Care Effectiveness (ACE), the body that advises MOH on drug subsidies, published formal guidance explicitly addressing onasemnogene abeparvovec — the generic name for Zolgensma — in the context of SMA treatment.

The guidance, dated 16 September 2025, stated that onasemnogene abeparvovec was not recommended for inclusion on the MOH Cell, Tissue and Gene Therapy Product List for the treatment of SMA in children under two years of age with Type 1 SMA or up to three copies of the survival motor neuron 2 gene.

ACE's stated basis for the recommendation was twofold. First, it found the available evidence insufficient to demonstrate that onasemnogene abeparvovec provides superior long-term efficacy compared to risdiplam, the subsidised disease-modifying treatment. Second, given the uncertainty over its superiority and its significantly higher treatment cost, ACE concluded that its cost-effectiveness was unfavourable at this time.

The guidance was published approximately six months before Ginny's parents launched their public fundraising appeal on 12 March 2026.