"Finding suitable medication for Jia Xuan was an extraordinary opportunity. We didn't want to miss this golden chance, and we are truly grateful for everyone's donations, which have given little Jia Xuan a chance at survival."
Yu Jia Xuan, the first Spinal Muscular Atrophy (SMA) patient in Malaysia to receive Spinraza gene therapy, has successfully raised the required RM 145,000 in a short period, thanks to the contributions from various sources.
ONE HOPE CHARITY, played a pivotal role in coordinating and raising the necessary medical funds for Jia Xuan's treatment. Dato' Chua Sui Hau, the chairman One Hope Charity, stated that they launched the fundraising campaign for 5-year-old Jia Xuan on July 18 (Tuesday), to raise RM 145,000 for her SMA treatment.
"The case of little Jia Xuan received immense attention and support from generous individuals and businesses from all corners, and within 18 hours, we successfully raised the needed amount to set her on the path of treatment."
Jia Xuan's father, Yu Kong Chai (41 years old), and mother, Voon Jian Jian (36 years old), expressed their heartfelt gratitude for the overwhelming support from the public to cover their daughter's medical expenses, allowing her to begin receiving Spinraza injections, a rare medication for the disease.
Voon Jian Jian mentioned that they had no prior information about SMA treatments, and by the time they learned about it, Jia Xuan had already surpassed the golden period for treatment. Fortunately, they discovered another medication that requires long-term injections. Nevertheless, they will always be by Jia Xuan's side as she grows, and they are thankful for the encouragement they have received from other parents of SMA children during this period.
Spinraza injection is one of the rare medications used to treat SMA, as it stimulates the production of more SMN protein in the body. It is administered via intrathecal injection, with four injections in the first two months, followed by one injection every four months, amounting to a total of nine injections within two years. This rare medication requires long-term injections and is costly.
Jia Xuan was diagnosed with Type 2 SMA at 1 year and 6 months old, and her parents were informed that her condition would worsen, leading to respiratory failure, and she might not live past the age of 2. Fortunately, with the dedicated care of her parents, she has now grown to the age of 5. However, she still cannot stand, crawl, or flip over independently, and she cannot sit steadily without support.
This year, her parents learned about various treatments for SMA, but their financial constraints made it difficult for them to afford the cost of medication. After conducting home visits and assessments, ONE HOPE CHARITY decided to lend a helping hand to Jia Xuan and assisted in raising RM 145,000 for her treatment."