Parents of 5-month-old S’porean baby with rare genetic disorder seek S$2.4 million for treatment

The parents of a five-month-old Singaporean baby girl born with a rare genetic disorder are urgently seeking donations for life-saving treatment.

The cure, known as Zolgensma, is the "world's most expensive drug": a prescription gene-replacement therapy priced at S$2.4 million per dose.

Her parents, Jenny and Quan, told Mothership that Ginny was like any other baby, at first.

However, at the three-month physical development milestone, her parents noticed something was different.

Something was amiss

Baby Ginny was born in September 2025.

After some time, her parents noticed she could not move her body in ways that infants her age should; her limbs barely moved, and she could not lift or turn her head.

When she was around four months old, Ginny developed pneumonia and was admitted to the high dependency unit, before she was moved to the intensive care unit (ICU).

She was hospitalised for 12 days in total.

When she finally came home, her parents noticed a significant loss in muscle strength and a quickened pace of breathing.

She could not lift her head, struggled to clear phlegm from her lungs and had difficulty drinking milk.

Her parents said, "We raised our concerns again and again, but answers did not come quickly."

The diagnosis

Their paediatrician said the underlying reason needed to be investigated, and eventually, genetic testing was conducted.

Ginny was eventually diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a condition that progressively destroys motor neurons and weakens muscles, affecting the brain and spinal cord.

As each day passes, more motor neurons are permanently lost.

Infants diagnosed with the condition rarely live past their second birthday.

Type 1 SMA is the most severe form of the disorder, which hinders the ability to sit, crawl, stand, walk, swallow and breathe independently.

@hopeforbabyginny She might not live to see her 2nd birthday... But she's a brave little warrior & she believes in the power of community and help. 💪 If you could donate or help to share her story, maybe she could live..link in bio 🤍 #zolgensma #savebabyginny #spinalmuscularatrophy #sma #fundraiser ♬ Somewhere Over The Rainbow - Passa Porto

Urgent treatment needed

As first-time parents in their 30s, Jenny and Quan dreamed about watching their child grow.

They said: "We never imagined we would be racing against time to save our baby's life".

Baby Ginny has been prescribed Risdiplam, an oral medication used to treat SMA by increasing survival motor neuron proteins.

The couple has spoken to doctors and parents of other SMA patients, who all recommend a combination of oral medication, Zolgensma gene therapy, and physiotherapy for Ginny to have a normal childhood.

Jenny said, "Time is of the essence, and the best outcome is when we can obtain medical treatment at the earliest possible time."

She added, "It truly takes a miracle to raise S$2.4 million, an amount that is so difficult for a normal family to fork out."

"Early treatment will give Ginny the best chance to live a normal childhood, and to us, she's not only a patient, but she's also our daughter, and we want to give her the chance to grow up and see the world for herself."

Ginny's parents also run Facebook, Instagram and TikTok accounts to provide updates on her progress.

As of Mar. 16, over S$240,000 has been raised by about 3,000 donors, which is 10 per cent of the goal.

You can donate to the campaign here.

Top photo from Jenny and Quan