Debbie White describes herself as someone who likes to work in the background, with no need for external validation. But the volunteer at the sight-loss charity Fight For Sight has nonetheless boasted an extraordinary fundraising career, one that has spanned 25 years and raised tens of thousands of pounds. All the while she has been slowly losing her eyesight to a rare degenerative condition.
Debbie’s journey with retinitis pigmentosa and Usher Syndrome II, a genetic disorder that affects the eyes and ears, started when she was a child, but she was not diagnosed until she was 21. She recalls that it was a relief to have an explanation for things she couldn’t make sense of, like missing the shot in a hockey game or being unable to find a pen she had dropped.
"I said ‘you’ve just got to get on with it; it’s a part of your life now’," she says, remembering a conversation with her brother, who was also diagnosed with the condition. Losing her eyesight isn’t something she notices every day, she says. She is just aware that other people see things differently.
A keen golfer, White was introduced to Fight For Sight while on a golfing holiday with former vice-president of the charity Clive Stone. Shortly afterwards she set up the charity’s Warwickshire committee. Initially involving a few family and friends, the network grew under her supervision and has raised more than £350,000 for the charity to date.
White’s fundraising activities have included an annual golf day fundraiser, which involves 20 corporate teams. She has also thrown herself into a series of skydives, from her first solo jump in 1995 to a 50th birthday celebration jump with 27 friends that raised £7,000 in 2015 and a Skydive for Sight jump with 18 colleagues in 2018, which raised £22,000 for the charity.
And after 25 years of volunteer service for Fight For Sight, White has no plans to slow her fundraising activities down: in April she will complete a sponsored zip-wire ride with a number of other colleagues, including someone she met on the night of the 2019 Third Sector Awards, where she scooped the prize for Volunteer of the Year.
"My goal is to help the children who are growing up with my condition or similar conditions today, because so many childhood eye conditions these days should not be happening," she says.
"There should be a cure to help them before they have to go through what my brother and I went through."
Finding a solution to any genetic disorder can be a long and complicated process. "It takes about 10 years to reach clinical trials, even when you get somebody who specialises in that sort of research," White says.
Nevertheless, she hopes her ongoing fundraising activities will help
fund research into cures and help people – such as a local child who suffers from corneal dystrophy and is supported by the charity – change their lives for the better.
"I would like to see something progressing," she says, "It could be my own little project, even if it’s just making a difference to one person."