Chapman Shum’s story

Chapman Shum, a 13-year-old blind pianist, recently undertook a musical adventure to Taiwan, participating in a competition tailored for individuals with visual impairments. Despite being the youngest contestant, Chapman showcased extraordinary musical talent and earned 3 awards across various categories. In the customary exchange among contestants, discussions often revolve around the causes of their visual conditions, fostering a sense of camaraderie. Participants typically find comfort and valuable insights by connecting with others who share similar experiences. However, Chapman’s journey is distinctive because the specifics of his diagnosis and the name of his condition remain unknown. This lack of information amplifies the solitude of his journey, as he grapples with uncertainties about the future.

Chapman’s Rare Condition Journey

Chapman Shum’s life has been an extraordinary journey since his birth in Hong Kong. He currently resides in London. Born with a rare and undiagnosed genetic condition, his condition presents a unique challenge that defies classification in existing medical databases. Although experts in Hong Kong note similarities to Norrie disease, Chapman’s case holds distinct differences, eluding a definitive diagnosis. 

This rare condition resulted in Chapman being born blind, accompanied by challenges such as speech difficulties, learning struggles, and symptoms of autism. Only a few days old, Chapman’s eyes presented a cloudy white cluster in both eyes. Immediately, he was taken to the eye hospital for various examinations. To rule out the possibility of a tumour, extensive tests, including CT scans and MRI scans, were conducted. The findings revealed that his eyes ceased development when he was 3 months old in the womb. In later stages, it was determined that a rare genetic disease was causing the condition, with no matched cases in Hong Kong. His genetic sample was sent to the UK Genetics Laboratory, and still, no matches were found from the entire UK. 

When Chapman was younger, it was believed that his learning difficulties were caused by his blindness. Given that he had never seen before, it’s understandable that his learning curve differed from other visually impaired children. Although he exhibited autistic behaviour when he was younger, medical professionals believed that this could also be attributed to his blindness, given the overlapping and similarities between the 2 conditions. As Chapman grew older, the symptoms of autism became clearer and were confirmed in a later stage.

On several occasions, Chapman experienced fainting episodes on the street, fortunately, accompanied by a carer and parents. It remains unknown whether these incidents are related to his condition. As he has not received a definitive diagnosis yet, the future is filled with uncertainty. Nobody can predict what implications this rare disease might have as he gets older. Having similar patients to reference and learn from their experiences would be invaluable, providing a glimpse of what the future might hold for Chapman.

Chapman and Music

Despite these hurdles and the absence of a clear diagnosis, Chapman’s spirit remains resilient. Music has played a pivotal role in his life, and his passion for it is palpable. His journey began with self-taught renditions of ‘It’s a Small World’ on a toy piano, evolving into a remarkable achievement at the age of 11 with a distinction in the ABRSM Grade 8 examination. Since relocating to the UK 2 years ago, Chapman has actively participated in various performances, using his musical talents to support charitable causes and share his can-do spirit. His inspiring story has earned him scholarships and the title of ‘Young Person of the Year 2023’ from SENSE UK.

Let Difficulties Know that You Are Difficult Too!

Chapman’s rare condition has posed significant challenges, but he refuses to let it define him or limit his potential. His passion, determination, and musical talent exemplify the resilience of the human spirit and the limitless possibilities achievable with the right support and opportunities. By sharing Chapman’s remarkable journey, the hope is to inspire not only those within the SWAN community but also a broader audience.