The winner of the MWOTY 2024 “Women of Courage” category, Jayne Hughes, has been awarded the British Empire Medal (BEM) for services to children with DNA repair disorders in the King’s New Year Honours List 2025.
The recognition for her work with charity Amy & Friends comes as Jayne and her family mark the fifth “angelversary” of their daughter Amy, who passed away on 1st January 2020.
Jayne established Amy & Friends – a charity supporting children with Cockayne Syndrome and linked DNA repair disorders and their families – in 2007, following many years of searching for a diagnosis for Amy.
Amy was eventually diagnosed at the age of 14 with DNA repair disorders Cockayne Syndrome/XRCC4. She fought many battles, led an amazing life and outlived her expected years, before her journey ended when she was just 28 years old.
Over the course of 17 years, Jayne and a small but committed team have supported – both directly and indirectly – more than 7,000 people affected by DNA repair disorders, which are conditions with no cure and for which research or information is limited.
Jayne said: “At the time I learned I was to be recognised in the King’s New Year Honours List, I was struggling with Amy’s upcoming fifth ‘angelversary’ – a term we use about the children we have lost.
“When I realised the date of the announcement and the enormous significance this will have for the charity’s ongoing work, I felt like Amy was there with me at that moment, like she’d had a hand in this.
“I accept this incredible honour but recognise it as a collective effort. Amy wanted to build something to help her friends, and I continue it as her legacy. I don’t do it alone, I have the support of a small but incredible team, scientists and medical professionals and of course our amazing families who remain at the heart of everything we do.
“I hope that this incredible recognition for Amy & Friends work will raise awareness of the challenges that children with rare DNA repair disorders and their families face and help drive positive change through support to ensure better quality of life and care, and more research for the future.”
The award is the third that Jayne has received in recent months, having also been named winner in the “Women of Courage” category at the Merseyside Women of the Year Awards 2024 and “Carer of the Year” at the BBC Radio Merseyside Making a Difference Awards 2024.
Jayne has continued Amy’s legacy through the work of the charity, helping children and their families in gaining diagnosis, providing information for medical papers, aiding research programmes, offering respite and 24/7 online support, organising transport and accommodation, and accompanying 10 families twice monthly to a specialist clinic in London, as well as delivering regular outreach events. The charity also holds an annual wellbeing conference for families and worldwide specialists, which was this year attended by more than 300 people.
To find out more, visit amyandfriends.org/
