'I just want her to grow up': Parents of 5-month-old baby with genetic disorder seek $2.4m for treatment

At just five months old, Ginny was diagnosed with Spinal Muscular Atrophy (SMA) — a genetic disease that destroys motor neurons and weakens muscles progressively. 

Ginny's parents, who wanted to be known only as Jenny and Quan, told AsiaOne on Wednesday (March 18) that she was born in September 2025 healthy with "nothing wrong". 

Over time, however, she barely moved her limbs and could not lift or turn her neck. 

When she was three to four months old, Ginny developed pneumonia and was hospitalised for 12 days at KK Women's and Children's Hospital (KKH). 

After returning home, the couple noticed their baby was "even weaker than before". They returned to the hospital for further checks and genetic testing. 

By early March, Ginny was diagnosed with SMA Type 1.

Life expectancy under 2 years without treatment

Jenny shared that the news came as a "big shock", considering she and her husband have no family history of the disease. 

Without any treatment, Ginny's life expectancy is estimated to be under two years. 

A one-time gene therapy, Zolgensma, is available in Singapore, but is not covered by insurance or government subsidies and costs around $2.4 million. 

As new parents in their 30s, the couple sought advice from doctors and parents of other SMA patients, who recommended a combination of oral medication, Zolgensma gene therapy and physiotherapy as Ginny's best chance.  

"Given the astronomical cost, crowdfunding was the only way," said Jenny. 

Jenny and Quan launched a crowdfunding page on Ray of Hope on March 12 to raise the funds needed for the drug. 

As of March 20, over $1.9 million, or around 79 per cent of the amount needed has been raised. 

The couple added that while funds are being raised, Ginny is currently taking oral medication and undergoing physiotherapy at KKH in hopes of slowing down the disease progression. 

'I just want her to grow up and see the world'

Quan shared that while Ginny has been struggling physically, there has been "no impact on her cognitive development". 

"She's very curious. She understands who is talking to her and will smile." 

He and Jenny believe that sharing Ginny's story will give them hope. 

"It's very simple, as a mother, I just want her to grow up and be able to see the world and explore on her own," said Jenny. "Just enjoy life as she can." 

"Hopefully, she can be normal," said Quan. "We hope that her body can keep up and she can stay stronger physically." 

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esther.lam@asiaone.com