At just five months old, Ginny was diagnosed with Spinal Muscular Atrophy (SMA) \u2014 a genetic disease that destroys motor neurons and weakens muscles progressively.\u00a0<\/p>\n
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”.\u00a0<\/p>\n
Over time, however, she barely moved her limbs and could not lift or turn her neck.\u00a0<\/p>\n
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).\u00a0<\/p>\n
After returning home, the couple noticed their baby was “even weaker than before”. They returned to the hospital for further checks and genetic testing.\u00a0<\/p>\n
By early March, Ginny was diagnosed with SMA Type 1.<\/p>\n
Life expectancy under 2 years without treatment<\/h2>\n
Jenny shared that the news came as a “big shock”, considering she and her husband have no family history of the disease.\u00a0<\/p>\n
Without any treatment, Ginny’s life expectancy is estimated to be under two years.\u00a0<\/p>\n
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.\u00a0<\/p>\n
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. \u00a0<\/p>\n
“Given the astronomical cost, crowdfunding was the only way,” said Jenny.\u00a0<\/p>\n
Jenny and Quan launched a crowdfunding page<\/a> on Ray of Hope on March 12 to raise the funds needed for the drug.\u00a0<\/p>\n As of March 20, over $1.9 million, or around 79 per cent of the amount needed has been raised.\u00a0<\/p>\n 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.\u00a0<\/p>\n Quan shared that while Ginny has been struggling physically, there has been “no impact on her cognitive development”.\u00a0<\/p>\n “She’s very curious. She understands who is talking to her and will smile.”\u00a0<\/p>\n He and Jenny believe that sharing Ginny’s story will give them hope.\u00a0<\/p>\n “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.”\u00a0<\/p>\n “Hopefully, she can be normal,” said Quan. “We hope that her body can keep up and she can stay stronger physically.”\u00a0<\/p>\n [[nid:731366]]<\/p>\n![](\"https:\/\/www.asiaone.com\/sites\/default\/files\/inline-images\/WhatsApp%20Image%202026-03-18%20at%2012.54.05%20%281%29.jpeg\")
<\/p>\n‘I just want her to grow up and see the world’<\/h2>\n
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