When Gary pulls on his leathers and climbs onto his motorbike, he’s racing for more than a podium place.
Across Ireland, if you hear the roar of an engine filling the air, you might spot a striking bike carrying the Lily logo. It turns heads, starts conversations and is raising vital funds for mitochondrial disease research. But for Gary, this isn’t just a fundraising challenge. It’s personal.
Because his three-year-old son, Fionn, is living with an ultra-rare form of mitochondrial disease.
A diagnosis that changed everything
For the first year of Fionn’s life, there seemed little cause for concern. Then his parents noticed that his left eye would twitch unusually and move as though it was searching for something.
“We took him to the doctor, and he said to bring Fionn into the emergency room, just in case,” Gary recalls. “It was one of those moments where your mind immediately goes to the worst possibilities – brain tumour, swelling on the brain… It could’ve been anything.”
After time in A&E as well as numerous scans, tests and appointments, doctors eventually diagnosed Fionn with retinal dystrophy, a condition affecting his eyesight. Looking back, the signs seem obvious to Gary and his wife Klara now. While other babies were exploring the world around them, Fionn couldn’t see further than about a metre in front of him.
At the time, the possibility that he might lose his sight felt overwhelming. “Just hearing there was a chance he could go blind was the worst thing we could have imagined,” Gary continues.
But the family adapted. Fionn got glasses and remained the same happy little boy he’d always been. Life carried on.
Then, a year later, everything changed.
The terrifying day no parent forgets
Just two days after Gary and Klara celebrated their wedding, Fionn developed what seemed like a routine childhood fever. But this time, he got cranky, really rundown and could barely sleep. Then, one morning, he started staring fixedly at the television.
“It was strange, because Fionn never looks at the TV,” recalls Gary, “because he can’t really see it.”
Moments later, he began to shiver. It was the start of a seizure. Gary called an ambulance and watched helplessly as Fionn drifted in and out of consciousness. The seizures continued for hours, even during the journey to hospital. The situation became so serious that emergency responders co-ordinated en route to support his care.
“It was terrifying,” says Gary. “The worst experience of our lives.”
After a week of scans, lumbar punctures and countless tests, severe epilepsy was diagnosed. Blood samples were sent away to Germany for genetic analysis, and the family waited for answers.
An ultra-rare diagnosis
What felt like an eternity later, the phone call came. Doctors had found the cause – a mitochondrial disease linked to a fault in the HSD17B10 gene. The condition’s so rare that only a handful of cases have been identified worldwide.
“We’d never even heard of mitochondrial disease,” adds Gary. “And suddenly we were told our son has a form of it so rare it doesn’t even have a name.”
Because so little is known about Fionn’s specific condition, nobody could predict what the future would hold. Doctors warned the disease could remain stable, or it could progress rapidly. That uncertainty was devastating.
What followed was a period Gary describes as ‘hell’. Faced with a diagnosis that carried more questions than answers, the family searched desperately for information. The limited resources available online painted a frightening picture.
“Because we didn’t really understand what was happening, it almost felt like we’d lost Fionn already,” Gary recalls. “We were waiting every day for something else bad to happen.”
Learning to live for today
Over the following months, Fionn underwent extensive checks on his heart, hearing and other organs. His family found themselves living from appointment to appointment, scanning for signs that something might have changed.
Thankfully, those fears haven’t become reality. More than a year after his diagnosis, Fionn remains stable.
He still tires more easily than other children, especially after illness, and his eyesight is the worst thing affected. He needs careful management of his energy levels, medication and specialist supplements. But he’s learning, growing and enjoying life.
“He’s incredibly bright,” says Gary. “He’s still learning complex things. That’s really encouraging.”
The experience has changed the way the family approach every day, and there’s one phrase in particular that’s helped them through the darkest moments – nothing changes until it changes.
Rather than allowing fear of the future to overshadow the present, Gary and Klara made a conscious decision to treasure every moment together.
“Last year we just went to work, came home, tried to be happy and then did it all again the next day,” explains Gary. “It was a very dark period for us, but we’re in a better place now. Trying to force ourselves to be happy for our kids is incredibly difficult when you’re dealing with something like this, but we owe it to them to try. If things did get worse, we’d deeply regret spending our time being unhappy instead of enjoying Fionn.”
Finding purpose through racing
Following Fionn’s diagnosis, Gary stepped away from the sport he’d loved for most of his life. Motorcycle racing no longer seemed important. But as the months passed, he realised he needed a way to channel his energy into something positive.
Searching online for mitochondrial disease charities led him to The Lily Foundation, and soon afterwards, an idea began to take shape. If he couldn’t control Fionn’s condition, he could at least do something to help raise awareness and support research.
So he took the thing he knew best – racing – and gave it a new purpose. “I thought, if I’m going racing, let’s make it mean something,” he says.
Today, three bikes proudly wear the Lily livery at race meetings across Ireland, a visible reminder of the incredible team effort behind this mission. Set up with close friends Ross, Dean and Brian, Gary’s team are powered by their shared dedication both on and off the track.
While Brian’s helped amplify the cause by spreading awareness through his motorsports website, the whole team use every event as an opportunity to talk to spectators, fellow racers and the wider motorcycling community about mitochondrial disease.
A QR code displayed in the paddock helps people learn more about the condition and make donations. The response has been incredible, and together, the team and their supporters have raised almost €10,000.
Putting mito on the map
Every race creates new conversations. Many people have never heard of mitochondrial disease before spotting the Lily branding on Gary’s bikes. That’s exactly why awareness campaigns like World Mitochondrial Disease Week matter.
For Gary, awareness is more than recognition. It helps drive research, speeds up diagnosis and brings hope to families facing an uncertain future.
“I wasn’t expecting to raise anywhere near what we have, but it’s been brilliant,” he explains. “My mum, my sister Chloe and my Aunt Sharon put together a coffee morning recently that raised nearly €5,000. They’ve helped our cause massively. And even if someone doesn’t donate, they hear about mitochondrial disease. It’s no longer invisible.”
And that’s why Gary’s journey resonates so strongly. Every lap completed, every conversation started and every mile travelled carries Fionn’s story a little further. A little more awareness. A little more hope. And a reminder that, even in the face of uncertainty, families affected by this devastating condition continue to find remarkable ways to put mito on the map.
Find out more and follow Gary’s racing @proto_eng.racing.
Get involved during awareness week
Whether you have two minutes or a day, every action helps put mito on the map. Here’s how you can make a difference from anywhere in the UK:
