A young couple in Singapore is racing against time to save their baby daughter after she was diagnosed with a rare and life-threatening genetic condition.
Five-month-old Ginny has Spinal Muscular Atrophy (SMA) Type 1, the most severe form of the disease.
Without treatment, many babies with the condition do not live beyond two years old.
Source: Ray of Hope website
Her parents have launched a public fundraising campaign to raise S$2.4 million for a gene therapy treatment that could significantly improve her chances of survival.
According to Ginny’s parents, the treatment is not covered by insurance or government subsidies in Singapore.
As of 17 Mar, the fundraiser had received about S$352,000 in donations.
Source: Ray of Hope website
Ginny’s mother, Ms Jenny, told MS News that the baby initially appeared healthy after she was born in Sept 2025.
However, things changed when Ginny was about four months old.
“When she was around four months old, she caught what started as a flu but later developed into pneumonia,” Ms Jenny said.
Ginny was hospitalised for around 12 days and spent time in the High Dependency Ward, Intensive Care Unit (ICU), and a general ward.
Even after being discharged, her parents felt something was not right.
“Around two weeks after she was discharged, we noticed that she was still using a lot of effort to breathe, which worried us.”
Their paediatrician later recommended further tests.
“Genetic testing was eventually done, and she was diagnosed with Spinal Muscular Atrophy Type 1 in early March.”
Spinal Muscular Atrophy (SMA) is a rare genetic condition that damages the motor neurons responsible for controlling muscle movement.
As these neurons gradually die, the muscles become weaker over time.
According to the family’s Ray of Hope campaign, babies with SMA Type 1 may progressively lose the ability to:
Without treatment, many children with the condition do not survive beyond early childhood.
Picture courtesy of Ms Jenny
Despite the diagnosis, Ms Jenny said Ginny remains an alert and curious baby.
“Day to day, Ginny is still a bright and curious baby,” she told MS News. “At the same time, SMA affects the nerves that control muscle movement, so we need to monitor her breathing and energy levels closely.”
Every day that passes means more motor neurons are permanently lost.
The family is also learning physiotherapy techniques to help support Ginny’s development.
“We are focusing on keeping her stable and comfortable while learning how best to support her development.”
Picture courtesy of Jenny
Although the diagnosis was devastating, doctors informed Ginny’s parents that a treatment exists.
A gene therapy known as Zolgensma has been used to treat children with SMA and can significantly improve outcomes if given early.
Some children who received the therapy early have been able to sit, crawl, walk, and breathe independently.
However, the treatment comes at an enormous cost.
“The [treatment] is extremely expensive, costing around SS$2.4 million,” Ms Jenny said. “This is far beyond what most families can manage on their own.”
Doctors have emphasised that early treatment is crucial.
“Early treatment is very important for children with SMA because the condition affects motor neurons over time,” Ms Jenny added.
Once those neurons are lost, they cannot be restored.
Picture courtesy of Jenny
Facing medical costs they cannot afford alone, Ginny’s parents decided to share their story publicly.
“Sharing our story publicly was not an easy decision, but we felt it was the only realistic way to try to raise the funds needed for treatment.”
The campaign aims to raise S$2,397,300, which includes payment processing fees.
Ginny’s parents believe small contributions from many people could help them reach the goal.
“If 240,000 people each give $10, Ginny can receive treatment,” they said. “If 24,000 people donate $100, we can save her life.”
They also hope Ginny’s story will raise awareness about rare diseases.
Picture courtesy of Jenny
Since launching the fundraiser, the family says they have been deeply moved by the kindness shown by others.
“Friends, family and even people we have never met have reached out to offer support, share Ginny’s story, or send messages of encouragement.”
The parents have also connected with other families whose children have SMA.
“Seeing the progress their children have made after treatment has given us hope during a very difficult time.”
Source: Ray of Hope website
Those who wish to support Ginny’s treatment can visit the family’s fundraiser page on Ray of Hope.
Updates about Ginny’s journey can also be found on Instagram and TikTok at @hopeforbabyginny.
If the fundraising target for gene therapy is not fully reached, the organisers said the funds will instead be used for Ginny’s medical care and physiotherapy.
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Featured image courtesy of Ginny’s mother, Jenny.