A dad has covered more than 500 miles in five days to raise money and awareness of the rare disease that affects his son, Leonardo.
Four-year-old ‘Nardo’ Devlin was diagnosed with the life-limiting Duchenne Muscular Dystrophy in 2014 – a condition which affects thousands of boys across the UK.
Now, his dad, John, 41, from Biddenham, has done his bit by taking part in an epic ‘MakeTime500’ cycle with 14 friends for the charity Harrison’s Fund.
The team included Dan McCarthy, Ian Griffith, Warren Bagnall, Dave Townsend, Guy Parkinson, Paddy O’Brien, Niall Kearney, Andrew Sparsis, Jon Tuffrey, Richard Randolph, Bully Rai, Simon McCartney, and Tom O’Connor. They cycled from London on the July 28 to Paris, finishing in Dieppe on August 1.
Harrison’s Fund is named after the 10-year-old from Surrey who was diagnosed with Duchenne Muscular Dystrophy, a rare genetic condition which affects all the muscles in the body, causing them to waste away. Harrison’s Fund’s goal is to get as much money as possible into the hands of the world’s best researchers, who are working to find a cure for Duchenne. The charity is currently funding 12 research projects in the US and the UK.
John said: “After Nardo’s diagnosis, the founder of Harrison’s Fun, Alex Smith, spent an hour talking to my wife, Marie, after initial contact on one of the Facebook groups. It was the first time we had a discussion with a person who could relate to what we were going through. It took six months before we could start to properly function again but it could have been longer without the extra help and advice that started with Alex.
“We met and spoke at various Duchenne events over the next year and we liked what we saw and heard; the more we looked into Duchenne and what people were trying to do the more we liked the lean charity approach and putting as much money as
possible directly into research that could help Leo, Harrison and others withDuchenne.
“The challenge was the furthest any of us had cycled in one go so we knew it would be tough! There are a few injuries and a lot of climbing and hills – with a grand climb total of 19,000 feet – but there were some lovely moments too when we were all working together as a group and things went really well. We saw some great scenery and reaching the Palace of Versailles at the end of day three when one of our riders caught the celebratory champagne in the eye as we hit the cobbles and toppled off his bike. We were even lucky with the weather, with only a few drops of rain!
“Our friends and family have been amazing, both in terms of support and their involvement with fund raising, but we aren’t finished yet. Looking ahead, we are organising a local food and drink event, involving and promoting local businesses in October, also for Harrison’s Fund, so hope to raise even more money still.”
The team’s initial target was to raise £8,000 but they have already smashed that and raised more than £11,000.
Alex Smith, founder of Harrison’s Fund and dad of Harrison, said: “It is devastating for any parent to hear the news that your child has Duchenne as you feel so helpless as it is out of your control but speaking with other families who are going through the same as you can help enormously as you feel less alone. Many of our supporters like John put that passion into something positive and raise money so we can continue our work. For that, we will always be grateful and hope one day we will achieve that life-transforming break through so Leo, Harrison and the boys like them have a chance at a real future.”
To support John and the rest of the team please visit https://www.justgiving.com/fundraising/maketime500