After Jude’s birth in October 2017, Dale and his partner Mel quickly realised he wasn’t developing normally, particularly when compared to his three older siblings. His eyes wouldn’t follow things properly, and at six months old he was referred for a brain scan which immediately highlighted a deformity.
“Jude had a lot of tests,” says Dale, “and he got his mitochondrial disease diagnosis very quickly. In a way we were fortunate compared to stories we’ve heard from other families.” Mel and Dale also underwent testing, a process which revealed that they both have the same miscoding of the same gene and Jude had inherited both. The couple’s other three children are healthy and well; against all the odds they’d passed that tiny mutation on to Jude.
His diagnosis was for LBSL – Leukoencephalopathy with brainstem and spinal cord involvement and lactate elevation. It’s an incredibly rare mitochondrial disorder with very few diagnosed patients in the world. “It’s life-limiting and Jude’s prognosis isn’t great,” Dale explains. “Like lots of kids with mito, he’s non-verbal and non-mobile.” The couple were told that he might not live past his second birthday, but Jude is now six.
Until their son’s diagnosis, Dale and Mel had never heard of The Lily Foundation either, but they attended their first Family Weekend in 2018 and have been to every one since. “That was our first experience of the charity,” says Dale, “and we were blown away. The Lily Foundation is a brilliant charity. I can’t say enough about what they do for us. We look forward to the weekend every year.”
The couple have met many like-minded parents at the Lily weekend with whom they’ve become friends, despite living miles apart and only meeting up once a year. And that’s part of what brings them back, again and again. “It’s that sense of community,” explains Dale. “You go into that hotel and everybody just gets it. People there talk to Jude like he’s a human being; no one stares at him like when I take him to the supermarket.”
A burning desire to make a difference
The support from the charity, alongside a desperate desire to make a difference, is what motivates Dale to fundraise so relentlessly. “I’ve been doing something personally since we first got Jude’s diagnosis,” he says. “It started off with half marathons, then it was endurance races, then getting colleagues involved in challenges during lockdown. We set up Team Jude and have raised loads of money and awareness.”
Two years ago they moved from Reading to Cornwall to be closer to family, and since then, Dale’s fundraising has intensified. His twin sons were selected to play for Redruth United Football Club, who were looking for a sponsor. Dale ran his own business at the time, and came up with the idea of sponsoring the club but putting Lily branding, rather than his company’s, on the shirts.
“We now sponsor 16 youth and three senior teams in various leagues,” says Dale proudly, “so that’s a lot of shirts. Redruth Ladies have just won promotion, and they’ve been massive supporters. They all know Jude personally, and six of them trained, fundraised and ran the recent London Landmarks Half Marathon alongside me.”
Word has spread, and the Cornwall Youth Football League have now made The Lily Foundation their charity of choice this summer. Dale firmly believes the move to the south-west has helped. “Redruth is such a lovely place to live,” he explains. “Reading’s more commercial and everyone’s busy. Cornwall’s just a different way of life, more relaxed and laid back. The community spirit has amazed me.”
He also thinks making personal connections is a great way to get people involved, so he’s made a point of taking Jude to meet all the football teams. “Because everyone’s met Jude it’s more personal. They could be doing stuff for loads of other charities, but they want to support The Lily Foundation. Plus, it's made people visit the website and research mitochondrial disease more as soon as they hear about it.”
Dale is driven by an intense longing to help in any way he can. “It’s hard to put into words that desire to do something for your child, but you feel helpless because there’s no cure. There’s nothing we can do physically apart from keep Jude comfortable, but what we can do is spread the word to generate more interest in the disease, more research and more money for the Foundation.”
Creating a sense of community
He loved the idea of creating a fundraising team and bringing people together to raise their own funds for the same cause. “Team Jude has a Facebook page with plenty of followers, some in Reading but loads in Cornwall too. Sometimes I drive down the street and see a runner in a Team Jude Lily top, or kids with the Lily logo on their tracksuit. That really creates a community and a sense of belonging.”
So where will the fundraising lead next? “In a few weeks myself and some of the guys from the Redruth football team are doing the national three peaks challenge,” Dale replies. “We’ll be wearing Lily hoodies and raising a Lily flag at the top of each summit. Then I’m hoping to run the London Marathon next year. I had to pull out this year due to injury.”
Despite that injury and the onset of middle age, Dale can’t see himself easing off any time soon. “I keep telling myself I need to slow down,” he laughs, “but I can’t resist any opportunity to do something and spread the word. Although I might have to move to wheels or water soon – I get more running injuries now I’m 53.”
Being Jude’s full-time carer, mum Mel hasn’t had much time to join in with Dale’s efforts, but with Jude now at school she’s free to get more involved and will be running the Bath Half Marathon next spring, her first fundraiser since his diagnosis.
“It just helps us feel like we’re doing something,” Dale affirms. “It can feel hopeless otherwise. There has to be hope, that’s what keeps you going. It’s in the Lily logo, isn’t it? I promote that logo wherever I can. I’ve even got it on the spare wheel of my Land Rover.”
He recently asked Liz, Lily’s founder and CEO, to attend Redruth United’s annual football presentations, an invitation she was delighted to accept. “Their commitment to raising awareness and funds totally blew me away,” she said afterwards. “The manager of the women’s team actually said that when a player’s struggling, he points them to the Lily logo and that inspires them to go out and do their thing. Their sense of community and the love for Jude and The Lily Foundation is truly humbling.”
Dale is in the process of setting up a new business, and as soon as it’s up and running Lily will naturally be the charity of choice. Dale’s previous company, Omnia Outsourcing Limited, supported the Lily Golf Day last September and have sponsored this year’s South West Golf Day, and his hope is that his new company will one day be a Lily event sponsor too.
We wish Dale all the best with the upcoming challenges, the new business and his continuing support. If you’d like to make a difference to the lives of families like Dale, Mel and little Jude, please donate today and help us support everyone affected by mitochondrial disease.
