Five-year-old Reese Tan Rui Xin, or better 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 efforts of several charitable organizations and creative agencies.
SMA is a rare genetic neuromuscular disorder that progressively weaken muscles, impacting motor functions like walking, swallowing and breathing. Infants or children with SMA may experience significantly reduced life expectancy without treatment
The inspiring journey of Baby Reese’s struggle and triumph over SMA will be featured in a 30-minute episode of Astro’s “Race to Save” program, airing on AEC Channel 306 on June 28, 2025 at 9pm.
This episode will capture the emotional and medical battle she endured, the nationwide fundraising efforts and her recovery progress post-treatment.
Diagnosed in September 2022, Baby Reese suffered severe muscle weakness due to SMA. 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 & 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.
Today, Baby Reese is in stable and satisfactory condition, with encouraging medical results marking a major milestone in her recovery.
“We hope this broadcast inspires families and raises awareness about SMA.
“Reese’s story showed us how digital storytelling can mobilize real-world action.
“Unicorn Media is proud to be part of this journey and we will continue to fight for children like Reese through the upcoming SMA Foundation,” said Unicorn Media chief executive officer Romeo Tan.
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, according to reports.
In Malaysia, although comprehensive national registries are lacking, the estimated incidence is around 1 per 20,000 live births (about 4.9 per 100,000), translating to 20 to 30 new cases annually.
A local study projects that about 50 infants are born with SMA each year based on Malaysia’s annual birth population.
SMA is still a little-known disease in Malaysia. Many parents feel overwhelmed and ill-equipped to deal with this disease which is on the rise in the country.
Building on the momentum of Baby Reese’s case which can affect anyone, Baby Reese’s mother plans to establish a 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.
UMMC leading geneticist and paediatrician Prof Dr Thong Meow Keong said there are still many public misperceptions surrounding SMA, including its causes, symptoms and how it’s managed.
“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.”
He said medical advancements have indeed provided new hope for families and patients affected by SMA.
“Zolgensma is a breakthrough treatment, but timing is everything. Zolgensma is a one-time gene therapy used to treat SMA. It 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 Dr Thong.
“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, visit her Instagram at https://www.instagram.com/p/ClYnv6ipQ47/?igsh=MWJrb2puYzRxbDE2Yw==
, airing on Astro AEC at 9PM, June 28, 2025.){kind=link}