The parents of an eight-year-old Kuching girl with spinal muscular atrophy (SMA) are appealing to the public for RM150,000 to fund her medication over the next three years.
Yu Jia Xuan, from Batu Kawa, has Type 2 SMA, a rare genetic condition that affects muscle strength and movement. There’s currently no definitive cure, so patients need long-term medication to slow the disease’s progression.
Her mother, Voon Jian Jian, said she first noticed something was wrong when Jia Xuan was five months old and rarely moved her legs. She was diagnosed at 18 months after medical examinations and blood tests.
The family went to West Malaysia seeking treatment and tried to secure a place in a clinical drug trial, but was unsuccessful. They were told no treatment was available and stayed there for over a year, working while they searched for help.
