This blog was written by Chun, father of Chapman.
“Chapman Shum, is a 13-year-old boy born blind with speech and learning difficulties resulting from a rare, unknown disease.
Despite these challenges, Chapman has discovered a path to thrive through music, serving as an inspiration to others facing difficulties in their lives.”
On the poster for Rare Disease Day 2024, a beaming Asian face is being featured — Meet Chapman Shum, a 13-year-old boy from Hong Kong, now living in London.
Rarely Rare
Chapman Shum faces the challenges of a rare, unknown genetic disease that rendered him blind from birth. Both of his eyes stopped developing at just three months gestation in his mothers womb.
Shortly after birth, he was taken to an optical hospital where the doctor, with over 40 years of experience, said that finding this condition in newborns is very rare.
On further investigation, his DNA was sent to the UK laboratory to check for any matching samples, but no matches were found – neither in Hong Kong’s database nor in the UK’s records.
This uniqueness makes him a one-of-a-kind patient so far, with the closest genetic match believed to be Norrie disease. In addition to blindness, Chapman also grapples with speech and learning difficulties.
Musical Calling
Chapman’s birth during Learning Disability Week appears to be a poignant twist of fate, as it associates with the learning obstacles he would encounter in his life.
However, it is truly remarkable that he chose to be born on the 21st of June, a day that coincides with the worldwide celebration of music known as World Music Day (or Make Music Day).
We see this like a message of hope and destiny, hinting at Chapman’s unique path and the role music would play in helping him navigate through the challenges he would encounter on his journey.
It was a trip to Disneyland around the age of 4 that truly ignited Chapman’s musical spark. The enchanting melodies he heard at the theme park left an indelible impression on him. Upon returning home, much to the astonishment of his family, Chapman taught himself to play “It’s a Small World” on a toy piano.
This captivating moment served as a resounding confirmation of his musical gift and marked a significant milestone in his musical journey. From there, Chapman’s musical abilities flourished.
At the tender age of 11, he achieved an exceptional distinction in the ABRSM Grade 8 examination, showcasing his remarkable talent and dedication, making the impossible possible.
Musical Triumph
In the past two years, Chapman has been performing across the country, including two of his Piano Recitals at the Westminster Music Library, where he mesmerised the audience with his music and spirit.
Chapman also actively participates in various performances, leveraging his talents to support charitable causes and inspiring others through the power of his music.
Recognising his achievements, he was nominated for the Hong Kong Spirit Award in 2021 and being honoured as the “Young Person of the Year” at the 2023 SENSE UK Awards, a national recognition in the field of disabilities.
Let difficulties know that you are difficult too!
Despite the challenges posed by his rare disease, he has not let it define him or limit his potential.
Chapman’s unwavering passion, determination, and musical talent showcase the resilience of the human spirit and the boundless possibilities that can be achieved with the right support and opportunities.
By sharing Chapman’s remarkable journey, we hope to inspire others within the rare disease community and beyond.
Rare Disease Day – February 29, 2024!
This upcoming Rare Disease Day is even rarer, falling on Feb 29, 2024, as it’s a leap year.
Chapman encourages everyone to participate, raising awareness for the 300 million people living with rare diseases worldwide.
The campaign aims for equitable access to diagnosis, treatment, and social opportunities for those affected by rare diseases.
Rare is Strong! Proud! Many!
Thank you, Chun for sharing your guest blog on Chapman’s story. We hope you enjoyed reading it!
If you’d like to write a guest blog for Beacon, find out more about sharing your story.
