Rare Disease Day (28 February 2025) - Hoay Wen Ling
Wen Ling with her family
Rare Disease Day (28 February 2025): Wen Ling’s Journey with Larsen Syndrome
This Rare Disease Day, we shine a light on Hoay Wen Ling, an inspiring 11-year-old who embraces life with resilience and determination.
Born in 2014, Wen Ling was diagnosed with Larsen Syndrome - a rare genetic disorder affecting approximately 1 in 100,000 people, along with scoliosis. Despite mobility challenges, she navigates daily life with strength. At home, she moves with a walker, and when outside, she relies on a wheelchair. Regular medical follow-ups help manage her condition, but her spirit remains unwavering.
Her daily routine includes a 15km journey to Woodgrove Primary School, a trip that takes about an hour each way. The journey is tiring, but she faces it with courage. Looking ahead, her family is concerned about transportation challenges when she enters secondary school, and they hope to find a better solution for her commute.
Wen Ling joined Club Rainbow (Singapore) in 2019 after her family learned about the organisation from other parents during a hospital stay. Since then, Club Rainbow has played a significant role in her and her family’s lives, providing essential support such as free transportation for hospital visits, financial assistance and emotional support from her dedicated social worker, Guan You. She has also had the opportunity to attend Camp Rainbow (a medically-supervised, three-day, two-night residential camp for Club Rainbow's children) twice, an experience she cherishes. She was also awarded the Talent Development Fund for two consecutive years (2024 and 2025), which has helped her pursue her passion for piano.
An avid artist, reader, and pianist, Wen Ling dreams of one day performing in a concert hall. With every note she plays, she proves that her rare condition does not define her.
To those reading her story, Wen Ling shares a powerful message:
“My diagnosis is rare, but I am not a rare person. I study, I play, I make friends.”
Her journey is a testament to the resilience and spirit of children living with rare diseases. On this Rare Disease Day, we celebrate Wen Ling and others like her, reminding the world that while their conditions may be uncommon, their dreams, aspirations, and determination are universal.
Rare Disease Day is a global initiative to raise awareness for people affected by rare disease globally. Over 300 million people live with a rare disease worldwide, and rare diseases are often chronic, progressive and frequently life-threatening.
Make a difference today - support Club Rainbow’s children like Wen Ling