Imagine being born blind and neurodiverse, only to begin losing your hearing just as your musical talent starts to shine. This is the reality for Chapman Shum, a 15-year-old pianist from Hong Kong who now lives and studies in the UK.
Adapting to hearing aids as a blind musician
Chapman’s blindness sharpened his hearing from an early age. With perfect pitch (a rare ability in just 0.1% of people) he could identify any sound or musical note. He began learning the piano at six and achieved a diploma in piano performance at 13. Not long after, he began losing his hearing.
Chapman has been given hearing aids and has gradually been adapting to them, although he’s still not entirely comfortable wearing them while playing music. Chapman’s dad Chun says:
With hearing aids, acoustic music feels artificial to Chapman. They amplify all background noises, making it harder to filter out what’s important, and since he experiences the world solely through sound without the aid of vision, he is highly sensitive.
A piano that’s even slightly out of tune can make it difficult for him to trust what he’s hearing while performing. However, one unexpected benefit is that Chapman can now hear birds singing again, something he’s always loved but has been missing. Inspired by this, he composed a piece mimicking birdsong.”
Staying creative and connected through music
Although Chapman’s hearing continues to deteriorate, he remains happy and positive – you may even recognise him from his appearance on season three of Channel 4’s reality show ‘The Piano’. Chun explains:
Perhaps due to his autism, Chapman does not dwell on the future. Instead, he focuses on the present and continues enjoying music in his own way. He says you should “let difficulties know you are difficult too”, and he uses his music to advocate for disadvantaged communities.”
Understanding Norrie disease
Chapman’s genetic condition remains undiagnosed, but it closely resembles Norrie disease. Children with this rare condition are born blind, and many begin to lose their hearing from the age of 12.
Currently there’s no treatment and children who develop hearing loss are offered hearing aids and cochlear implants, but these devices have limitations, especially given the children’s blindness.
Facing hearing loss for the first time
Chun says:
We worry he will not enjoy music in the same way and that it could affect his ability to perform and learn new pieces, but people say pianists can still ‘hear’ music in their mind even if their physical hearing declines.
We encourage Chapman to explore and create the music he truly loves. We support him in composing his own music, recording every tune and melody he creates to allow him to listen back, memorise, and engage with it in a personal and meaningful way.
Since he finds verbal expression challenging, the piano has become his voice, and he translates his daily experiences into music. He has composed a piece called ‘Hannah’s Voice’, inspired by the gentle and soothing voice of his teacher.”
How research could transform lives like Chapman’s
It was while researching hearing-related news and information about Norrie disease that Chun discovered RNID.
We found an article discussing RNID’s research efforts, particularly their advancements in gene therapy to prevent hearing loss in Norrie disease. Knowing that RNID is funding research to reduce hearing loss associated with this disease gives me and Chapman so much hope.
Progressive hearing loss is a major concern for people with conditions like Chapman, and having the chance to slow or prevent it could change lives. It’s encouraging to see organisations working towards solutions.”
The gene therapy research offering new hope
RNID is currently funding research led by Professor Jane Sowden that advances a gene therapy that could significantly reduce hearing loss associated with Norrie disease.
The team of researchers will use the results of this project to support their application for permission to start a clinical trial. If successful, the research will advance a new genetic-based treatment that could slow down or prevent hearing loss, reducing the impact of Norrie disease on affected people.
This project’s approach could also eventually be adapted to treat other forms of inherited hearing loss, potentially preventing hearing loss in large numbers of people.
We believe we are on the brink of gene therapy becoming a treatment for many incurable diseases, and we are at the beginning of applying this technology to deafness. I hope that gene therapy will, in the future, make a difference for people who have hearing loss.”
– Professor Jane Snowdon
