Their Baby Was Diagnosed with Rare Disorder Requiring $1.8 M Treatment. What Happened Next Shocked Them

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.

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.

“Thank you to every kind soul in this world,” they also wrote on Instagram, where the family is tracking Ginny’s treatment plans.

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