Five-month-old Ginny should be discovering the world the way most babies do, with tiny kicks, curious movements, and the excitement of growing stronger each day.
She already smiles when she sees familiar faces and recognises the voices of the people who love her. But while her mind is eager to explore life, her small body is slowly losing the ability to move.
Ginny has been diagnosed with Spinal Muscular Atrophy Type 1 (SMA Type 1), the most severe form of SMA. The condition destroys motor neurons that control muscle movement, gradually weakening a child’s muscles. Without treatment, many babies with SMA Type 1 do not live beyond the age of two.
Her parents first sensed something was wrong when Ginny was about two to three months old. Although she was alert and responsive, her legs barely moved, and she struggled to lift or turn her head. Soon after, she developed pneumonia and had to be admitted to the intensive care unit.
Watching their tiny daughter struggle to breathe was heartbreaking. When Ginny returned home, her parents noticed that she had lost even more muscle strength. She could not support her head and had difficulty clearing mucus from her lungs. Even drinking milk became challenging.
At five months old, a DNA test finally confirmed the diagnosis
However, there is still hope. A gene therapy treatment called Zolgensma has helped many children with SMA sit, crawl, walk, and breathe independently if administered early. But the treatment costs about SGD2.4 million (~RM7.3 million). In Singapore, it is not covered by insurance or government subsidies.
For Ginny’s young parents, the amount is far beyond what they can afford, and they are now appealing to the public for help.
“If 240,000 people each donate RM30.70, Ginny could receive the treatment she urgently needs,” the parents shared on Ray of Hope, a fundraising site for baby Ginny.
“We also know that it’s a large sum and, in the unfortunate event that the funds raised are insufficient for Zolgensma, Ray of Hope will ensure that the funds go towards Baby Ginny’s other medical expenses and physiotherapy.”
Even the smallest contribution, or simply sharing this story, could give baby Ginny a chance to grow up and live the life she deserves.
