Worthing man joins 500-mile fundraising cycle to raise awareness of disease
A dad of two from Worthing cycled more than 500 miles in five days to raise money and awareness of a rare disease that affects his friend's son, Leonardo.
Andy Sparsis, 40, the owner of the Worthing-based Proto restaurant group, joined Leonardo’s dad, John and has done his bit by taking part in an epic ‘MakeTime500’ cycle for the Duchenne disease charity, Harrison’s Fund.
Four-year-old, Leonardo, was diagnosed with the life-limiting Duchenne muscular dystrophy in 2014 - a condition which affects thousands of boys across the UK.
Andy and John were joined by a team of 12 others as they cycled from London on July 28 to Paris, finishing in Dieppe on August 1.
The team of riders included Dan McCarthy, Ian Griffith, Warren Bagnall, Richard Randolph, Guy Parkinson, Paddy O’Brien, Jon Tuffrey, Niall Kearney, Bully Rai, Simon McCartney, Dave Townsend and Tom O’Connor.
Andy said: “The challenge was the furthest any of us had cycled in one go so we knew it was going to be tough.
“There were a few injuries and a lot of climbing and hills - with a grand climb 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 were even lucky with the weather, with only a few drops of rain.”
Harrison’s Fund is named after ten-year-old, Harrison Smith, 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, 41, added: “After Leonardo’s diagnosis, the founder of Harrison’s Fund, 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 with Duchenne.
“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 over £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 hopeless 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 breakthrough so Leo, Harrison and the boys like them have a chance at a real future.”
To support John and the boys, please visit: https://www.justgiving.com/fundraising/maketime500.
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