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
#RainbowofHope - Lam Xi Yang
Xi Yang and his mother, Mdm Lai
For Xi Yang, the Education Award marks a significant turning point in his educational journey. As a student who has faced challenges both inside and outside the classroom, the award has not only provided essential resources but also inspired a newfound sense of pride and motivation. This is his first time receiving the award, a milestone he reflects on with a mix of gratitude and hope for the future.
A Renewed Sense of Pride and Motivation
When asked how the Education Award has impacted his studies, Xi Yang shared that it has helped him feel proud of his achievements, boosting his motivation. "It could be making myself proud so that I can feel better while I'm studying," he explains. The recognition of his hard work through the award has provided him with a renewed sense of purpose and confidence as he moves forward in his education.
Facing Challenges and Finding Strength
Xi Yang’s journey has not been without its challenges. He describes facing difficult experiences in school, but despite these struggles, the Education Award has given him something positive to focus on—his academic growth. This recognition serves as a reminder of his potential and the importance of staying resilient through difficult times.
Investing in Tools for Academic Success
With the Education Award, Xi Yang’s mother, Mdm Lai, was able to use it to pay part of Xi Yang’s school fees, ensuring that his education remains uninterrupted. In addition, the award has also allowed Xi Yang to invest in essential tools that help him succeed academically. "I bought English assessment books to help me focus better on my studies so that I can perform better during exams," he shares. These resources provides him with additional practice and materials to help him prepare for exams and improve his performance in one of his key subjects, ensuring that he is equipped to succeed.
Building Confidence and Self-Worth
Mdm Lai recognises the deeper impact of the Education Award on her son's emotional and psychological well-being. "It will help Xi Yang learn how to recognise when he does well and feel proud of himself," she says. She believes the award is a step toward building his confidence, allowing him to feel more positive about himself and his abilities.
The support has also helped her son grow more confident in social situations. "It will help him feel happier about himself and also make him more confident," she adds. This emotional boost is just as important as the educational resources the award provides, giving Xi Yang the strength to push forward despite adversities.
A Vision for the Future
Mdm Lai is hopeful that the support he has received will shape his future in meaningful ways. "It will motivate him to continue studying until it becomes a habit because knowledge and skills can be used to improve life and create positive changes," she explains. She envisions him developing the ability to transform not just his own life, but also to contribute to society around him. "I hope he has the ability to transform himself and society," she adds, filled with optimism for what lies ahead.
A Heartfelt Message of Gratitude
Both Xi Yang and Mdm Lai have expressed deep gratitude to those who make the Education Award possible. "Many people say they want to help, but few actually step up to do it. So, thank you so much for being one of the few today and stepping up with your important donation," Mdm Lai says. Her heartfelt thanks reflect the significance of this support, not just for Xi Yang’s education, but for his confidence and belief in his potential.
The Education Award has been a powerful tool in Xi Yang’s academic and personal growth. It has helped him face challenges, build confidence, and invest in his future. With the continued support of organisations like Club Rainbow, Xi Yang’s journey of transformation is just beginning, and the path ahead is filled with hope and possibility.
Support low-income families like Xi Yang’s family by donating to our #RainbowofHope Fundraising Campaign
#RainbowofHope - Danish Hilman Bin Zakaria
Mdm Norleza (3rd from left), Danish Hilman (5th from left) and family
For many families, educational support can be the key to unlocking a brighter future, and for Mdm Norleza and her son Danish, the Education Award has done just that. As a single mother of four, Mdm Norleza was facing significant financial challenges. However, "the Education Award has alleviated some of our financial strain and enhanced Danish's educational experience," she says. The financial relief has allowed her family to reallocate resources towards other essential expenses, providing much-needed relief to the family’s finances.
A Renewed Sense of Confidence and Determination
Mdm Norleza explains that the Education Award has been instrumental in giving Danish a renewed sense of self-worth and determination. "Receiving the Education Award has validated Danish's hard work and dedication, fostering a stronger belief in his own abilities," she shares. The award has motivated Danish to continue his studies with a renewed sense of purpose, knowing that his efforts are being recognised and supported.
Enhancing Educational Tools and Opportunities
With the financial support from the Education Award, Mdm Norleza and Danish were able to invest in a crucial tool for Danish's learning: a laptop. "The Education Award has enabled us to purchase a laptop for Danish," Mdm Norleza says. This laptop has become an essential resource for his education, providing him with access to a wealth of learning materials, online resources, and the tools needed to complete assignments efficiently.
A Shift in Perspective on Danish's Future
The support has also had a profound impact on how Mdm Norleza views Danish's future. "With such strong backing behind him, I am confident that he is well-equipped for success," she reflects. “This support not only enhances his educational journey but also instills a sense of hope and determination, ensuring that he has the opportunities and resources necessary to thrive in the years to come.”
A Heartfelt Message of Gratitude
Mdm Norleza concludes her reflection with a message of deep gratitude for those involved in providing the Education Award. "I would like to express my heartfelt gratitude to Club Rainbow (Singapore) and the organisations providing the Education Award. Your generous support has made a significant difference in our lives," she says. "It has not only eased our financial burdens but also empowered Danish to pursue his education with renewed confidence and motivation. Your efforts truly inspire hope and create brighter futures for families in need."
The story of Danish and Mdm Norleza is a powerful testament to the transformative power of educational support. The Education Award has not only made a tangible difference in Danish’s academic life but has also fuelled the hope of a mother striving to give her children the best future possible.
Support low-income families like Danish’s family by donating to our #RainbowofHope Fundraising Campaign
Double the Happiness
The twins, Shaista and Shazia
Four months into her pregnancy, Mdm Siti Nurhafizah (Fiza)’s doctor had noticed that one of the twins she was carrying was smaller in gestational size than usual. Further blood tests detected abnormal blood flow from the placenta to the baby.
Subsequently, Mdm Fiza had to go for an ultrasound scan three times a week to monitor their development. At 28 weeks of pregnancy. Mdm Fiza’s heart sank when her doctor broke the news to her. “He told me that one of my twins only had a 20 percent chance of survival. I had to undergo an emergency caesarean section to save one of my babies. I broke down at that moment. I could not bear to lose any of them,” she said. Fortunately, Nur Dina Shazia, the smaller of the twins, weighing only 900 grams at birth, survived against the odds. She was born with retinopathy of prematurity, an eye disease affecting premature babies, which may lead to blindness in serious cases. Her condition was successfully treated after an eye surgery during her 2-months stay in the Neonatal Intensive Care Unit (NICU). Her twin sister, Nur Dina Shaista, was also a Very Low Birth Weight (VLBW) infant, weighing 1.2 kilograms at birth, and stayed in NICU for four months before her discharge.
VLBW infants weighing less than 1.5kg at birth have a lesser chance of survival and are at higher risk of suffering from further complications. Double After their discharge from the hospital, Mdm Fiza and her husband, who also have three elder children, had to monitor the girls closely for signs of Global Developmental Delay.
A significant delay in two or more developmental domains affecting children under the age of five years is termed Global Developmental Delay.
Health and developmental challenges
Mdm Fiza has been proactively bringing them for therapies since they were toddlers so they could catch up with their peers. Still, she worries about Shazia’s literacy skill which is not on par with other children of her age and her hearing difficulties. Shazia and Shaista used to suffer from asthma attacks once every two to three months, which have gradually become less frequent as they grow older. Every six months, Mdm Fiza has to bring them to National University Hospital (NUH) for hearing and vision assessment and follow-up on their asthma condition
Journey with Club Rainbow
Their doctor and medical social worker from NUH referred the family to seek help from Club Rainbow when the twins were 1 year old. On one occasion, when the twins were hospitalised for bronchitis, triggered by a change of their milk powder, Club Rainbow stepped in to provide support and relieve the family’s financial burden by providing them with diapers as well as milk powder that is suitable for the children's condition.
The family is then further supported with monthly food rations. When the children reached schooling age, they are also supported with annual bursaries, to ease the family's financial burden. Ever since they were pre-schoolers, Shazia and Shaista have been actively participating in various social integration programmes, including drama workshop, excursions to KidsStop and Night Safari, Equine Tour (horse riding and stable tour experience), and more.
One of the most memorable events for them was a Christmas lunch event at a hotel, sponsored by our corporate partner. It was their first dining experience at a hotel, and the ambience and presentation of the food left a vivid impression on them. Mdm Fiza particularly enjoys family bonding events like outings to the zoo. She also looks forward to receiving useful gifts for the girls like new school bags under our yearly “Back to school” programme.
Since trying out Hip Hop dancing under our Arts Development programme in 2019 and having the opportunity to perform at the opening concert of Dreamseeds Arts Fest, the twins found a common passion in Hip Hop dancing. When asked about their dreams, Shazia replied without hesitation, “I want to be a Hip Hop singer!”
“I want to be a Hip Hop singer too! I also want to be a firefighter so I can save people,” exclaimed Shaista. Both of them are recipients of the Talent Development Fund, a grant to encourage our children to pursue their interests in a non-academic area. Mdm Fiza plans to utilise the grant to pay for Hip Hop dance lessons during the June school holidays.
Taking care of a pair of twins with medical conditions and her three elder children is no easy task. The emotional and counselling support Mdm Fiza receives from her Club Rainbow social worker, Sylvia, helps her to cope with her journey as a caregiver and her caregiver stress. Sylvia checks in regularly with her and often gives useful suggestions such as how she can support her elder son who would be taking his ‘N’ level (even though he is not a beneficiary), as well as to ensure she does not neglect her own self-care by setting aside her “me-time”, and how she can set aside time to go on dates with her husband to strengthen their marital relationship.
Her pride and happiness “With the support from Club Rainbow, I feel much less burdened,” said Mdm Fiza. “Having twins meant double the trouble but also double the happiness for me.” The twins makes her proud in their own ways. She shared that Shazia who once refused to speak in Malay recently surprised her by singing Malay songs while Shaista is advanced in her reading ability. Her wish for her children is simple. “I hope that they can get along well with their friends, be happy, and be who they want to be.”