https://sg.style.yahoo.com/baby-diagnosed-rare-disorder-requiring-173159561.html
Tue, 24 March 2026 at 1:31 am SGT
4 min read
Baby Ginny
Credit: Ray of Hope
Singapore-born Ginny, 5 months, is just like so many other babies. Her parents describe her as being "bright and curious."
"She smiles when she sees familiar faces and recognizes the voices of the people who love her. She watches the world with bright curiosity," they wrote on Ray of Hope, a group fundraising system, where the couple turned for help after Ginny was diagnosed with Spinal Muscular Atrophy, a rare illness that could claim her life before her second birthday without proper treatment.
They continued on the fundraiser, writing, "Her mind is ready to discover life. But while her mind is growing, her tiny body is slowly losing the ability to move."
According to the Cleveland Clinic, Spinal Muscular Atrophy is a "genetic (inherited) neuromuscular [disorder] that cause certain muscles to become weak and waste away."
Ginny was diagnosed with SMA type 1, which as her doctor Dr Jocelyn Lim told The Straits Times, was the most common type of the disease.
Babies begin to display symptoms within the first six months of their lives. However, the disease is rare, with the outlet reporting that it only affects roughly one in 10,000 people. In Singapore, where Ginny lives with mom Jenny Mak and her dad, there are one or two diagnoses each year.
Mak told the outlet that Ginny first started showing symptoms when she was roughly 3 months old. A caretaker at her daycare noticed that the baby wasn't able to hold up her head during tummy time, a milestone that children at that age typically display.
However, doctors assured the family that it might have been "a normal occurrence." They were told to monitor her in case it was a sign of something more serious.
“She was alert and responsive like any baby her age. But her body wasn’t moving the same way. Her legs barely moved,” Mak recalled.
Baby Ginny, 5 months, was born with a rare disorder that if left untreated could keep her from reaching age 2.
Credit: Ray of Hope
More
Things took a turn for the worse in January 2026 when Ginny wound up hospitalized after being diagnosed with pneumonia.
After she displayed continued trouble breathing, the family turned to KK Women’s and Children’s Hospital, where they met Lim and received the diagnosis in late February.
“Type 1 SMA patients like Ginny will have low muscle tone, poor neck control and poor leg movements. They also have difficulties swallowing and feeding, and often have poor weight gain. They can have frequent respiratory infections that take longer to recover from,” Lim explained to the outlet.
Describing the illness and how it progresses, she added, “As motor neurons are irreversibly lost, patients get progressively weaker, resulting in respiratory damage, feeding difficulties and failure to thrive. They will require long-term respiratory and feeding support, without which most Type 1 patients do not survive past two years and may succumb, most commonly to respiratory infections."
There are some treatment options that can make Ginny's chance of surviving easier. One is a gene therapy program called Zolgensma. Another is a form of oral medication called Risdiplam. There are subsides for the former, but the latter is not covered in Singapore and costs more than $1.8 million.
That's why Mak and her partner took to Ray of Hope on March 12, attempting to raise the money that they needed to get their daughter on the program. On Saturday, March 21, they succeeded.
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They addressed the happy news in an update on the fundraising page, writing, "When we first began this journey, we didn’t know what to expect. Many of you went above and beyond—sharing Ginny’s story, reaching out to your communities, and standing alongside us in hope. We’ve been deeply moved by the kindness, generosity, and compassion you’ve shown. 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."
"We’ve begun coordinating the next steps with the hospital, and if all goes smoothly, Ginny will be able to start her therapy in the coming weeks. Our next focus is to keep Baby Ginny in the best health ahead of the therapy," they added.
Their Baby Was Diagnosed with Rare Disorder Requiring $1.8 M Treatment. What Happened Next Shocked Them
The couple's 5-month-old daughter was diagnosed with a disease that could end her life before she turned 2
Michael NiedTue, 24 March 2026 at 1:31 am SGT
4 min read
Baby Ginny
Credit: Ray of Hope
NEED TO KNOW
- Five-month-old Ginny was diagnosed with a rare genetic disorder called Spinal Muscular Atrophy, which she could die from before her second birthday
- Her parents successfully raised more than $1.8 million in less than 10 days to get her access to an expensive gene therapy program
- "We’ve been deeply moved by the kindness, generosity, and compassion you’ve shown," the parents wrote of the successful fundraising attempt
Singapore-born Ginny, 5 months, is just like so many other babies. Her parents describe her as being "bright and curious."
"She smiles when she sees familiar faces and recognizes the voices of the people who love her. She watches the world with bright curiosity," they wrote on Ray of Hope, a group fundraising system, where the couple turned for help after Ginny was diagnosed with Spinal Muscular Atrophy, a rare illness that could claim her life before her second birthday without proper treatment.
They continued on the fundraiser, writing, "Her mind is ready to discover life. But while her mind is growing, her tiny body is slowly losing the ability to move."
According to the Cleveland Clinic, Spinal Muscular Atrophy is a "genetic (inherited) neuromuscular [disorder] that cause certain muscles to become weak and waste away."
Ginny was diagnosed with SMA type 1, which as her doctor Dr Jocelyn Lim told The Straits Times, was the most common type of the disease.
Babies begin to display symptoms within the first six months of their lives. However, the disease is rare, with the outlet reporting that it only affects roughly one in 10,000 people. In Singapore, where Ginny lives with mom Jenny Mak and her dad, there are one or two diagnoses each year.
Mak told the outlet that Ginny first started showing symptoms when she was roughly 3 months old. A caretaker at her daycare noticed that the baby wasn't able to hold up her head during tummy time, a milestone that children at that age typically display.
However, doctors assured the family that it might have been "a normal occurrence." They were told to monitor her in case it was a sign of something more serious.
“She was alert and responsive like any baby her age. But her body wasn’t moving the same way. Her legs barely moved,” Mak recalled.
Baby Ginny, 5 months, was born with a rare disorder that if left untreated could keep her from reaching age 2.
Credit: Ray of Hope
More
Things took a turn for the worse in January 2026 when Ginny wound up hospitalized after being diagnosed with pneumonia.
After she displayed continued trouble breathing, the family turned to KK Women’s and Children’s Hospital, where they met Lim and received the diagnosis in late February.
“Type 1 SMA patients like Ginny will have low muscle tone, poor neck control and poor leg movements. They also have difficulties swallowing and feeding, and often have poor weight gain. They can have frequent respiratory infections that take longer to recover from,” Lim explained to the outlet.
Describing the illness and how it progresses, she added, “As motor neurons are irreversibly lost, patients get progressively weaker, resulting in respiratory damage, feeding difficulties and failure to thrive. They will require long-term respiratory and feeding support, without which most Type 1 patients do not survive past two years and may succumb, most commonly to respiratory infections."
There are some treatment options that can make Ginny's chance of surviving easier. One is a gene therapy program called Zolgensma. Another is a form of oral medication called Risdiplam. There are subsides for the former, but the latter is not covered in Singapore and costs more than $1.8 million.
That's why Mak and her partner took to Ray of Hope on March 12, attempting to raise the money that they needed to get their daughter on the program. On Saturday, March 21, they succeeded.
Want to keep up with the latest crime coverage? Sign up for PEOPLE's free True Crime newsletter for breaking crime news, ongoing trial coverage and details of intriguing unsolved cases.
They addressed the happy news in an update on the fundraising page, writing, "When we first began this journey, we didn’t know what to expect. Many of you went above and beyond—sharing Ginny’s story, reaching out to your communities, and standing alongside us in hope. We’ve been deeply moved by the kindness, generosity, and compassion you’ve shown. 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."
"We’ve begun coordinating the next steps with the hospital, and if all goes smoothly, Ginny will be able to start her therapy in the coming weeks. Our next focus is to keep Baby Ginny in the best health ahead of the therapy," they added.
