On Christmas Eve 2022, 21-year-old Harvey Brookfield noticed a change in his vision.
Curious, he covered one eye, then the other. What started as confusion quickly turned to shock: “The first time I noticed my vision wasn’t right, I covered up my left eye and thought, that doesn’t seem right,” Harvey recalls. “Then I noticed that I couldn’t see out of my right eye.” It was shocking not only for him, but for his family: “My dad asked me, ‘Can you see the Christmas tree?’ and I said, ‘No, I can’t see it.’”
'Can you see the Christmas tree?’ and I said, ‘No, I can’t see it.’
Chasing down a diagnosis
The next day, while many families were celebrating Christmas, Harvey and his parents were in hospital searching for answers. Initially diagnosed with optic neuritis (inflammation of the optic nerve), Harvey’s vision continued to deteriorate over the following months. By May 2023, after undergoing genetic testing, he was diagnosed with Leber hereditary optic neuropathy (LHON), a rare inherited condition that causes sudden sight loss, primarily in younger men. “It was very traumatic and upsetting,” Harvey says. “You have days where you think, ‘Why me? Why does it have to happen to me?’”
Before losing his sight, Harvey described himself as constantly on the go. He worked full-time as a media operator at a car dealership, photographing vehicles and writing advert descriptions. Outside work, he spent his time cycling, going to the gym, watching Liverpool football matches and socialising with friends: “I was always active and always on the go!” he shares.But as his vision deteriorated, everyday tasks that once felt automatic suddenly became difficult. Registration plates became blurry at work. Driving, something that once gave him complete independence, was no longer possible. Even choosing clothes and navigating unfamiliar spaces became challenging. “You don’t realise how valuable your sight is when you’ve got it,” Harvey explained.. He went on to share how he avoided going out altogether for some time, explaining: “You don’t know what’s around you.”
Rebuilding confidence after sight loss
But over time, support from family, friends and local organisations helped him rebuild his confidence. Friends regularly took him out for meals, coffee and walks, while local sight loss charity Galloways introduced him to adaptive sports and support services. “It gives people a purpose again,” Harvey says.
That sense of purpose became an important part of adapting to life with vision loss. Harvey set up a gym at home so he could continue exercising independently and began finding new ways to enjoy the things he loved, from using commentary earpieces at football matches to learning accessibility features on his phone. “It’s about trying to live the same way, just slightly differently,”.
He also started a YouTube channel and posts videos aimed at people with vision loss and other disabilities: “This has helped me develop new skills and build confidence and independence by achieving something that was previously out of my comfort zone,” he explains, “And of course, my content is very audio based to make it as accessible as possible.”
Harvey also speaks openly about the emotional impact of vision loss and the importance of mental well-being throughout the process: “A lot of it is keeping mentally healthy as well,” he says. “Fitness really helps with that.”
Learning to focus on what you can do without sight
Although adapting has not been easy, Harvey says he is learning to focus on what he can still do, rather than what he has lost: “Step out of your comfort zone because you can surprise yourself with the things you can still do.”
The now 24-year-old hopes sharing his story will help raise awareness of LHON and show others facing vision loss that they are not alone: “I’d say keep positive in the best way that you can,” he says. “If you don’t try new things, then you won’t know what you can still do.”
“A lot of it is keeping mentally healthy as well,” he says. “Fitness really helps with that.”
Work we’re funding for people living with LHON
At Fight for Sight, we fund pioneering research into sight loss conditions such as LHON, helping drive progress towards better understanding, treatments and support for people affected by vision loss. We also fund social projects that bring equity and independence to people with sight loss conditions like LHON, from tech upskilling to phone befriending.
Find out more about the work we’re funding into conditions such as LHON, and keep up to date with the latest vision research break-throughs on our research page, or by signing up for our newsletter.
