Beating the Odds with a Smile: Chevelle’s Journey of Courage and Joy
From the very beginning, Chevelle has proven herself to be a fighter. Born prematurely at just 33 weeks and 6 days, weighing only 1.4kg, she arrived into the world already battling immense odds. She received her first blood transfusion while still in her mother’s womb at 27 weeks gestation, and after birth, spent her first month in the Neonatal Intensive Care Unit (NICU). Chevelle was diagnosed with hydrops fetalis—a rare and serious condition in which excessive fluid accumulates in a baby’s body. This can affect organs such as the heart, lungs, and abdomen, and if left untreated, it can be fatal. In Chevelle’s case, it caused her heart to enlarge and fluid to build up in her body. During that one month stay at NICU, she underwent multiple blood transfusions and also received intensive treatment for severe jaundice.
Despite the grim prognosis, Chevelle defied the odds. Doctors at KK Women’s and Children’s Hospital (KKH) diagnosed her with alpha major thalassaemia—a rare genetic blood disorder where the body is unable to produce red blood cells. Incredibly, she became Singapore’s first known survivor of the condition. With the support of a dedicated medical team, she began receiving monthly blood transfusions to stay alive.
At just 2.5 years old, Chevelle underwent a groundbreaking haploidentical stem cell transplant using her father’s cells—the first alpha major thalassaemia patient to undergo this procedure. The two-year treatment journey included rounds of chemotherapy and frequent hospital visits. “She needed to shave her head and was bald for two years,” her mother, Ms Chan, recalls.
By the age of four, her health stabilised enough for her to begin attending Early Intervention Programme for Infants and Children (EIPIC) School, despite being diagnosed with global developmental delay and speech delay earlier. However, Chevelle often falls ill and needs to miss school, which can be difficult for both her and her family. Last year, she was also diagnosed with Oppositional Defiant Disorder (ODD), which presents additional behavioural challenges at home. Still, Chevelle remains energetic and full of life. “She is active and cheerful,” Ms Chan shares.
A Spark of Joy at Christmas
Chevelle’s family first joined Club Rainbow (Singapore) through a KKH nurse’s recommendation. Subsequently, they learnt about Club Rainbow’s Kris Kringle programme through a text message. Every year, families are invited to submit a small wish that their child would love to receive for Christmas.
Last December, Chevelle asked for a basketball and a badminton set—gifts that reflected her growing enthusiasm during school PE lessons. “Her legs and muscles had grown stronger, and she started showing interest in sports,” Ms Chan shared proudly.
Receiving her Kris Kringle gifts brought Chevelle immense joy. She was also able to take part in special outings and workshops under Club Rainbow. “Chevelle was excited when she received her Kris Kringle gifts. Chevelle also loves exploring fun and exciting places,” Ms Chan recalls. These experiences became treasured moments for the family. “(Kris Kringle) brings such heartwarming feelings for both the caregiver like myself and the beneficiary, it truly makes the beneficiary feel so happy and excited.”
A Community of Support
Beyond Christmas cheer, Club Rainbow has provided consistent, meaningful opportunities throughout Chevelle’s journey. She eagerly attends art classes and joins hip hop and K-pop dance lessons with gusto. “She loves these lessons,” Ms Chan says. “Club Rainbow also supports caregivers like me. I started to join their caregiver programmes last year—and having childminding available made it possible.”
A Message of Gratitude
To the donors, sponsors and partners who make Kris Kringle possible each year, Chevelle’s family offers heartfelt thanks:
“Thank you for making our children happy and giving them a wonderful Christmas.”
And to anyone considering supporting the programme this year:
“Please donate—you’ll bring a smile to a child’s face and spark joy this Christmas.”
Support our children like Chevelle via #DiamondsofResilience Fundraising Campaign. Every donation also brings a double blessing: Thanks to Tote Board’s dollar-for-dollar matching, your contribution will go twice as far in brightening the lives of our children this holiday season.
Share the gift of hope and make this season brighter for our children - donate today, start your own fundraising campaign or spread the word with #SpreadRainbowCheer #DiamondsofResilience!
About Club Rainbow (Singapore)
Established in 1992, Club Rainbow (Singapore) is a non-profit organisation and charity dedicated to supporting and empowering children with chronic illnesses – many of whom are with special needs and disabilities – and their families. Through a holistic suite of compassionate, relevant services, we journey with them towards living with dignity, and becoming active contributors to the society.
Website: https://www.clubrainbow.org
Contact number: 6377 1789
Email: contact@clubrainbow.org
Facebook / Instagram / TikTok / LinkedIn / YouTube: @clubrainbowsingapore