A local charity founder has been awarded the British Empire Medal in the New Year’s Honours list.
Jayne Hughes, founder of charity Amy & Friends, has supported over 7,000 people affected by DNA repair disorders over the course of 19 years.
The charity was established in 2007, after Jayne and her family searched tirelessly for a diagnosis for her daughter Amy.
At the age of 14 it was discovered that Amy had a rare DNA disorder, Cockayne Syndrome. She died at the age of just 28, on January 1 2020. However her mother has been carrying on her legacy by celebrating every year the “angelversary” of Amy to mark the fifth year since her passing.
Jayne and her team have been committed to supporting those waiting on or receiving a diagnosis as well as providing 24/7 online support and help with information for medical papers and research programmes.
Jayne said: “It’s a real privilege, but for me it isn’t about me. It’s about trying to get the story of the children and the illness out there.
“When I first set the charity up there was no doctors in the UK that had any interest or knowledge in the illness.”
This will be the third award that Jayne has received in recent months, after winning “Women of Courage” at the Merseyside Women of the Year Awards and “Carer of the Year” at the BBC Radio Merseyside Making a Difference Awards 2024.
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