THE family of an inspirational Wirral woman who died from a rare disorder have cycled 275 miles from Venice to Milan to raise funds for an awareness-raising conference.
Amy Garton-Hughes, from Wallasey, passed away on New Year's Day, 2020.
The 28-year-old had Cockayne Syndrome, a rare disorder which causes premature ageing, and was the inspiration behind campaign group Amy and Friends Cockayne Syndrome and Trichothiodystrophy Support.
This week 35 cyclists cycled from Venice to Milan to help raise funds for the charity. Among them were Amy's mum Jayne Hughes, Amy's sister Laura, local business director Jayne O'Gorman from Azure Collection Chester, director Matt Bullas from Wirral Homes Ltd and Stephen Ogilby from SJP Wealth Management to name a few.
Funds raised through the cycle challenge will help pay towards a scientific conference 2023 on the disorder and more importantly will spread awareness. The total amount raised is not yet known, as money is still coming in.
This challenge was set in 2019, and due to take place in 2020 when Amy expected to cheer the cyclists home at the finish line.
Very sadly, she passed away in January 2020.
The world then went into lockdown with covid.
Mum Jayne told the Globe today: "As soon as we were all given the go ahead to reorganise the ride we began our training again.
"The company that planned this was Chapeau Events in Cheshire. They wrote: 'As crew we really do get to spend time with some incredible human beings who go above and beyond.'
"'This bunch of legends cycling for Amy and Friends started in Venice and cycled 261 miles in gruelling heat through the countryside and passed some breathtaking scenery."
"Some trained more than others, some literally just got on their bikes, but they all made it.
"They smiled, they cried and they inspired all of us. Big bikes, heavy bikes, fast and slow bikes made no difference – they did it!"
Jayne continued: "I thought long and hard to find the words to write about the most amazing people who rode with me.
"We became a team, an army, for children who suffer from Cockayne Syndrome, TTD and related DNA repair disorders.
"The money we raised – on target to being a whopping £73,000 will pay for our family / scientific conference 2023, and more importantly will spread awareness.
"What a team we were, we rode hills, got stuck in tram lines, almost got taken out by speeding cars/lorries/tractors, riding busy roads, cobbled streets, peaceful lanes with sunflowers and corn fields, cycling next to beautiful sparkly lakes.
"Some of us had heat exhaustion, the intense sun made it even more difficult and many of us had chafing (we won't go into that!), but all of us bonded, we hugged, we inspired, we laughed and we cried.
"We would like to thank Jayne O'Gorman and Anna Baccanello from Azure Collection for organising this event and to everyone who joined us on this incredible ride."
A Globe-backed campaign - the Help Amy Appeal - raised more than £30,000 for Amy and other CS sufferers in 2007.
Since arriving back in the UK, Jayne Hughes has been revealed as one of eight finalists to be shortlisted for the 2022 National Diversity Awards for the prestigious Lifetime Achiever Award sponsored by ITV News.
Source - Wirral Globe