On Christmas Eve 2022 Kevin and Gill’s world changed, when their son Harvey, then 21, suddenly lost his sight. They describe how they helped Harvey to deal with the uncertainty and heartbreak following that night. And ultimately how his resilience has filled them with pride.
The couple, who live in Aintree, describe that Christmas eve in vivid detail, Harvey came downstairs and told his dad that he couldn’t see out of his right eye. Kevin asked him to cover his left eye and look at the Christmas tree.
“He said, ‘I can't see it,’” Kevin remembers. “And of course, your whole world falls apart at that point because you don't know what's happened.”
What followed was a long period of tests, appointments and unanswered questions. Initially Doctors couldn’t find anything wrong with the eye itself. Eventually, genetic testing confirmed that Harvey had Leber hereditary optic neuropathy (LHON), an inherited condition affecting the optic nerve that causes relatively sudden loss of central vision.
For Kevin and Gill, the diagnosis led to even more questions, which they’d never expected to face as parents: What would happen to Harvey’s sight? What would his future look like? And was there anything that could be done?
“It was just a complete shock,” says Gill.
Learning to support, without taking over
For Kevin and Gill, supporting Harvey has meant learning to adapt while allowing him to remain himself. Before losing his sight, Harvey was independent, sociable and determined. He went to watch Liverpool play whenever he could, hit the gym five times a week and loved his cars. Those passions and characteristics haven’t disappeared. In many ways, his parents say, they have become even more apparent.
“He's very, very independent,” says Kevin. “And he can do so much for himself.”
That has meant resisting the temptation to do everything for him. Harvey has found new ways to pursue the things he loves. He remains passionate about classic cars, something he shares with his dad, and has discovered that losing his sight does not mean losing his ability to contribute.
Kevin admits that, initially, he wasn’t sure what Harvey would be able to do.
“I didn't believe for one minute he could do the things that he could do before, but he can.”
Harvey works on cars using touch and takes great care when using tools. He also creates exercise videos for his YouTube channel, using accessible technology and equipment.
For Kevin and Gill, finding things Harvey can enjoy and feel useful doing has been crucial.
“It's our priority, really,” says Kevin.
Sight loss doesn’t have to be the end of trying new things
The family has also made a conscious decision not to let sight loss stop them from doing things together. Kevin, who admits he never used to enjoy concerts, has found himself going to gigs with Harvey. They have seen Stevie Wonder, Sting and other artists together, and have more concerts planned. Music has become one way for Harvey to enjoy experiences alongside everyone else.
“You can just sit down and listen and you're just the same then as everybody else,” says Gill.
They also go to watch Liverpool matches, attend car shows and make the most of opportunities to get out of the house.
“We try and go out as much as we possibly can,” says Kevin.
For other families facing sudden sight loss, Gill believes it is important to remember that there is still a life to live.
“You can adapt,” she says. “Where there's still life to live.”
“You can adapt, there's still life to live.”
Kevin and Gill’s advice to other parents
The advice Kevin and Gill have for other parents or relatives of people facing vision loss is simple: don't give up.
“I think what we would say is don't give up, keep looking forward,” says Kevin. “And there's no point in looking backwards because it won't help you. Just keep looking forward.”
They know that isn’t always easy. There have been difficult days, and they have had to discover a resilience they didn’t know they had.
“You just don't know where the strength comes from,” says Gill. “You've just got to pick yourself up.”
But they have also seen their son find new ways to live his life, and they have found new ways to support him. For Kevin, that includes making sure Harvey knows that he has a future and something to contribute. The family is also passionate about ensuring that people with sight loss are given opportunities, particularly in employment.
“Harvey needs a job. He doesn't want to be on benefits. He wants a job,” says Kevin. “This person's got an awful lot to offer.”
Read more about accessible employment after vision loss here >
"He doesn't want to be on benefits. He wants a job. This person's got an awful lot to offer.”
Finding hope in research
The family are hopeful that research into eye conditions like LHON could lead to better treatments in the future.
Gill says that simply knowing researchers are working towards answers gives them something to hold on to. Harvey is currently taking part in a clinical study on LHON in Cambridge, funded by Fight for Sight, which is working to understand more about the condition. Harvey is also the face of our Christmas campaign, helping us to raise more funds that will fund sight-saving, life-changing research.
For Gill, research isn't something distant or theoretical. It represents the possibility that things could change for families like theirs.
“I do believe in research,” she says. “So in the meantime, anything on the news about a breakthrough, about eyesight or things like that. We all stop and listen, saying this could be the day that something could happen.”
That hope is one reason why sharing stories like Harvey’s matters. The more people understand about rare sight loss conditions, the more visible the need for research becomes—and the more families can see that they are not alone.
More real life stories about people living with sight loss >
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