A fundraising journey through mitochondrial disease - The Lily Foundation
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Fighting mito,
finding hope.

A fundraising journey through mitochondrial disease

Personal stories Fundraising

20 November 2024

Sid and Kerry, parents of three from Yorkshire, are navigating a life with the challenges of their son Bill’s mitochondrial disease. Through their dedication to fundraising and involvement of the local community, they’ve found both hope and a strong support network to help them deal with the disease.

A mum, dad and three children in the Lake District countryside, all wearing Lily Foundation tops Mito parents Kerry and Sid smiling with their York Marathon medals Young mito warrior Bill with his 2 siblings in front of a Lily banner at school Sid and Kerry with a friend having completed London Landmarks half marathon Dad Sid greeting son Bill in his wheelchair on completing the Snowdonia Ultra Challenge

Sid and Kerry’s life revolved around work, family and raising their three young children. But when their eldest son Bill turned seven, their world took a dramatic turn. Bill began to suffer from unexplained fatigue, far more than the usual tiredness or growing pains. The couple took their son from doctor to doctor, convinced something wasn’t right. The first time they heard the term mitochondrial disease was through Bill’s paediatrician, who casually dropped it into conversation when Bill was undergoing a raft of tests.

But it was only after three long years of appointments and assessments that they finally received a confirmed diagnosis of mitochondrial disease. “It felt like a terrifically long period of time to wait for a diagnosis,” says Kerry, “but now we realise we were quite lucky compared to some families. At least we could move on, knowing what we were dealing with. Our doctor told us we would become experts in Bill’s mitochondrial disease. That was the most petrifying thing anyone could say. We didn’t know anything about the disease.”

As they processed the diagnosis and focused on finding out as much as they could about mitochondrial disease, Kerry and Sid wondered where the help would come from. They went back to work, feeling utterly lost and unable to comprehend what they’d been told. Their only lifeline was a leaflet their doctor had handed them about The Lily Foundation.

“The friends we never wanted”

The Lily Foundation has connected Kerry and Sid to other families facing the same struggles, a bond they refer to as “the friends we never wanted”. It was when Sid ran the London Landmarks Half Marathon that they first became involved with the charity, but even so it was with reluctance, fearing it would be emotionally overwhelming.

“We were really naïve,” recalls Kerry. “We thought that with our amazing family and incredible friends, we had enough support.” But the couple found meeting other families in similar situations transformative. “We had no idea how much you need other people with that lived experience,” she continues. “You cannot survive and stay buoyant without that.”

“We were adamant that we weren’t going to the support weekend,” laughs Sid. “I think we were trying to protect Bill too – we didn’t want him to see what his future might potentially hold. But we plucked up the courage, met other families and it was so powerful. We genuinely felt like we’d found our people.”

“I honestly don’t know where we’d be without The Lily Foundation now,” adds Kerry. “We’d be a very different couple and a very different family. The friends we’ve made are incredible and so much positivity has come out of our involvement with the charity.”

Finding purpose through fundraising

Faced with the hopelessness of Bill’s diagnosis, Sid found purpose through fundraising. Aiming to raise both money and awareness, he turned his passion for running into a mission, beginning by completing two marathons in a week! At the same time, he set up a JustGiving page and began to share the truth about Bill’s condition with friends and family. He quickly hit a significant fundraising target, and that success led to a series of ever-more ambitious events.

Sid’s efforts have inspired friends, family and even their local community to get involved. Their team, ‘Team Bill’, has grown to include everything from marathons and skydives to an incredible Yr Wyddfa (Snowdon) challenge and 24 hours of football; from golfing to swimming challenges and even a local ‘20 pubs in 20 miles’ charity event. The family have built a network of support and raised tens of thousands of pounds for The Lily Foundation.

Their efforts have been shared on social media and they’ve even started to build links with local media. “We’ve been on the radio, we’ve been in the press, probably too many times,” chuckles Sid. “Bill and I are in the local paper almost every week!” But by spreading the word about the disease, the family are helping to raise awareness and that’s just as important as raising funds.

Kerry and Sid’s efforts have inspired new traditions too. Bill’s primary school adopted The Lily Foundation as its charity of the year, organising a ‘move-a-thon’ where the entire school, children and teachers, got involved in physical activities in Bill’s honour. Family members as far afield as Kerry’s mum’s WI in Shropshire have chipped in, illustrating the far-reaching impact of their story.

Strength, resilience and hope

Fundraising has become more than just a way to generate money; it’s become a source of strength for the couple. They know some of the money they’ve raised will be invested in research, and they’re driven by the hope that a cure might one day be found. “This is our path now,” affirms Sid. “It gives us purpose. It helps us channel pain into something positive and feel like we’re contributing to research that could change lives.”

“You feel so helpless when you get the diagnosis and you’re told there’s no effective treatments or cure,” he continues. “But there’s ongoing research, so you just want to put money in that pot. I’m motivated by the fundraising now and that keeps me mentally and physically fit. It’s also good preparation for what’s ahead of us.”

“It isn’t a hopeless situation,” adds Kerry. “We all have the power to make a difference. It’s about giving back to The Lily Foundation and supporting the research, of course, but there’s a selfish element to it too – it enriches our lives and gives us strength to have something positive to focus on. It’s scary knowing what’s ahead but we have to find a way to deal with it and the fundraising helps.”

Now, they’re encouraging others to join in, from charity runs to the award-winning ‘Bill’s Blend’ coffee created by a family friend. Their goal is to raise £100,000 to support mitochondrial disease research. It’s a slow journey, but Sid and Kerry hope that what they’re doing now will make a difference to other families travelling a similar path in the future.

“As parents who sat in a room with strangers who told us our child had an illness for which there is no cure,” explains Kerry, “we want to do whatever we can to change that for other parents. The diagnosis Bill received was bleak, but our hope is that his legacy will leave a positive mark.”

In the meantime, the couple’s focus remains on enjoying life with Bill and his siblings, savouring each milestone and embracing each day as a gift. They concentrate on finding joy in small moments rather than material things, a lesson they hold close as they look to the future.

And as they continue to fundraise, and Sid sets his sights on next year’s Chicago Marathon, their story reminds us that even in the face of overwhelming odds, it’s possible to turn pain into purpose. Kerry and Sid’s journey with Bill is one of resilience, community and the unbreakable strength of family. Through their unswerving commitment to raising funds for The Lily Foundation, they’re ensuring that no family in the future has to face mito alone.

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