New SMA Foundation Offers Hope and Support to Children Living with Spinal Muscular Atrophy
In a powerful story of hope, resilience and collective compassion, five-year-old Reese Tan Rui Xin fondly known as Baby Reese has successfully received RM9 million in lifesaving gene therapy for Spinal Muscular Atrophy Type 2 (SMA Type 2), thanks to nationwide support and the dedicated efforts of several charitable organizations and creative agencies.
Diagnosed in September 2022, Baby Reese suffered severe muscle weakness due to SMA, a rare and often fatal genetic disorder. At the time, she was unable to crawl, stand or walk and needed respiratory assistance to eat and breathe, conditions that placed her life at critical risk.
Under urgent medical advice to administer the Zolgensma gene therapy before the age of two, her family turned to One Hope Charity and Welfare for help. Together with Unicorn Media and Hexarus Creative Agency, an ambitious nationwide fundraising campaign was launched and the nation responded. Through a wave of public generosity and strategic storytelling, the RM9 million goal was achieved, enabling Baby Reese to undergo treatment at Universiti Malaya Medical Centre (UMMC).
Today, Baby Reese is in stable and satisfactory condition, with encouraging medical results marking a major milestone in her recovery.
Foundation Launch and Awareness Mission
Spinal Muscular Atrophy (SMA) is the leading genetic cause of infant mortality and a rare, inherited neuromuscular disorder that affects muscle strength and movement¹ Globally, SMA occurs in approximately 1 in 10,000 live births, with birth prevalence rates varying from 1 in 6,000 to 1 in 16,000 depending on region.²
In Malaysia, although comprehensive national registries are lacking, the estimated incidence is around 1 per 20,000 live births (roughly 4.9 per 100,000), translating to 20 to 30 new cases annually.³ A local study projects that about 50 infants are born with SMA each year based on Malaysia’s annual birth population.⁴
SMA is still a little-known disease in Malaysia, impacting newborns to adolescence. Many parents are clueless how to manage this disease which is on the rise in the country.
Building on the momentum of Baby Reese’s case, Baby Reese’s mother will establish a dedicated SMA Foundation next year to raise greater awareness of SMA and support more children affected by this rare disease. The foundation aims to provide financial assistance, educational resources, and promote pre-pregnancy genetic screening to help families detect genetic risks early.
“Nothing prepares a parent for hearing that your child may not survive without a treatment you can’t afford. I am forever grateful to everyone who prayed, donated and stood with us. Reese is alive today because of you all. Now, we want to help other families walk this path with hope, not fear,” said Rachel Chung, Baby Reese’s mother.
“There are still many public misperceptions surrounding SMA, including its causes, symptoms and how families can manage the condition. Traditionally, there was no cure or hope for children diagnosed with SMA, and families had to rely entirely on supportive care to manage the symptoms,” said Professor Dr. Thong Meow Keong, UMMC’s leading geneticist and paediatrician.
“Medical advancements have offered new hope in the fight against SMA. Zolgensma is a breakthrough treatment, but timing is everything. Zolgensma is a one-time gene therapy used to treat Spinal Muscular Atrophy (SMA), a rare genetic disorder that affects muscle strength and movement. Zolgensma works by replacing the missing or faulty gene (called SMN1) that causes SMA, helping the body produce the protein needed for muscle control and movement,” explained Professor Dr. Thong Meow Keong. The earlier a child receives it, the better the outcomes. We urge all parents planning a family to undergo pre-pregnancy genetic screening. Early detection saves lives and Baby Reese is living proof.”
For more information about Baby Reese, you can visit her Instagram at https://www.instagram.com/p/ClYnv6ipQ47/?igsh=MWJrb2puYzRxbDE2Yw==
¹ojrd.biomedcentral.com+1codeblue.galencentre.org+1.
² emedicine.medscape.com+15en.wikipedia.org+15clinicaltrialsarena.com+15.
⁴ physio-pedia.com+8researchgate.net+8ojrd.biomedcentral.com+8.