THE family of an inspirational Wirral woman who died from a rare disorder will be among those taking part in a cycle ride for a charity supporting people with the condition later this week.
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.
Amy’s story was followed by the Wirral Globe, as readers learned about her journey to Boston, USA, to get a diagnosis of Cockayne Syndrome, meeting her soul mate Nick, from Texas, and her parents starting a registered charity, 'Amy and Friends' to help other children and young people with DNA repair disorders.
The charity supports more than 1,000 families worldwide and helps many children with other rare disorders.
This Thursday (June 13), Amy's mum Jayne and sister Laura will cycle 185 miles in three days, stopping in Belgium and then continuing on through to Eindhoven. They will be joined by business people and parents and scientists from across the Northwest.
A spokesperson for Hillbark said: "We are all in this together, united in our efforts to make a difference. We are excited to share a special event happening here at Hillbark Hotel and would love for you to be a part of it!
"We invite you to sponsor us online or to drop in throughout the day as our team members take turns cycling and clocking up those miles.
"Your generous sponsorship can make a significant and direct impact on the lives of the children and families supported by Amy and Friends.
"By supporting us, you are not just helping us cycle, but also providing vital assistance to those in need. Together, we can create a brighter future for all those who rely on our collective compassion and action.
"Every contribution helps, and we are deeply grateful for your generosity and support."
'Amy and Friends' provides contact 24-hours-a-day seven days a week and twice weekly online meetings for well-being and siblings activities.
Twice a month it organises and accompanies five families to a specialist clinic in London, organising trips for family members, camping for brothers and sisters and annually they provide a family/medical conference where children/young people can meet each other, like Amy did and parents can share information, advice and make friends.
Scientists are able to gain knowledge to help towards treatments for the many issues occurring with these life limiting disorders.
Amy and Friends has also helped write many medical papers and 'continually pushing research forward'.
A Globe-backed campaign - the Help Amy Appeal - raised more than £30,000 for Amy and other CS sufferers in 2007.
Jayne told the Globe: "I am so very grateful to everyone talking part in the cycle and all who continue to help children and families with Amy’s illness. I’m also grateful to the Wirral Globe for following Amy’s story and helping us get to where we are today.
"Although there is no cure for Cockayne Syndrome and related disorders, there are now many treatments available to alleviate some of the symptoms the children/young people suffer with and these wouldn’t exist but for Amy or yourselves.
"I’m sure our Amy girl would be so very proud.
"Amy’s dream was to help children and families like hers and her legacy continues.
"We arrived back in the UK on Thursday after being asked to join with the Marie Sklodowska-Curie Actions Rotterdam research consortium in Erasmus University, this included scientists from Netherlands, Italy, Belgium, UK and Norway and is primarily to join forces with scientists to coordinate research focus and to also train the next generation of phd students looking to work in the field of rare disorders.
"This is at the early stages of planning the programme which should go live in autumn 2025.
"Scientists are looking for links between rare and common disorders - mainly neurodegenerative illnesses such as Alzheimer’s and Parkinson disease and research possible interventions - if they find common causes between certain neurodegenerative symptoms in both rare and more common illnesses this creates more interest globally and potentially helps more quickly with therapies for rarer disorders."
To support the team at Hillbark on its virtual cycle ride for the appeal, go to: https://www.justgiving.com/page/hillbark-hotel-1716909411180
For more information on Amy and Friends, go to: https://amyandfriends.org/
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