A charity rock festival in Whitehaven is turning up the volume for Marley’s Moves
CHARITY ROCKS!
A charity rock festival in Whitehaven is turning up the volume for Marley’s Moves and raising awareness of CDKL5.
by Danni Murphy
A day of live music in Whitehaven this September will do far more than showcase some of Cumbria’s best rock bands. Every ticket sold will help support two worthy local causes, Marley’s Moves and Rosehill Youth Theatre, with all proceeds going directly towards their work.
Taking place at The Solway Hall on Saturday 19 September, Fil Rourke’s Rock 24/7 celebrates the legacy of the much loved local musician while bringing together some of the county’s finest rock talent for almost 10 hours of live music.
For one of the beneficiaries, the event represents far more than a fundraising concert.
Marley’s Moves was created by the family of 14 month old Marley Jones, who was diagnosed with the extremely rare genetic condition CDKL5 Deficiency Disorder when she was just eight weeks old.
Born on 1 May 2025, Marley lives in Whitehaven with her parents, Neirin and her mum, along with her older brother Douglas. Despite facing daily challenges, Marley is described as a happy, determined little girl whose smile rarely fades.
“She’s a funny, happy baby,” her mum explains. “No matter what CDKL5 brings her with uncontrollable seizures and the inability to walk or talk, Marley still bounces back from almost every seizure with a smile on her face.”
Marley experienced her first seizures at just three weeks old and was admitted to the Royal Victoria Infirmary in Newcastle, where she underwent numerous tests including MRI scans, EEGs and genetic testing. Weeks later came the diagnosis that would change her family’s lives forever.
CDKL5 Deficiency Disorder is an extremely rare neurological condition that causes severe epilepsy and developmental challenges. It affects an estimated one in every 40,000 to 60,000 people, yet there are now three children living in Whitehaven with the condition.
Marley’s Moves was created to raise awareness of CDKL5, provide updates for family and friends, and connect with other families living with the condition. The page has become an important source of support, helping to build a wider community while educating people about the realities of living with such a rare disorder.
The fundraising element is equally important.
Throughout her life, Marley will require specialist equipment and medical support, much of which is not routinely funded by the NHS. Without fundraising, families can find themselves having to purchase expensive equipment themselves or make do with items that don’t fully meet their child’s needs.
Money raised through Rock 24/7 will help ensure Marley has access to the equipment she needs to continue learning, developing and enjoying the best possible quality of life.
Marley’s family also hopes the event will raise awareness across the local community.
“We’d love to see Whitehaven come together to support children like Marley,” her mum says. “Our hope is that, in the future, all the local families affected by CDKL5 could benefit from shared fundraising events that bring the community together.”
Alongside supporting Marley’s Moves, proceeds from the event will also benefit Rosehill Youth Theatre, helping to provide creative opportunities for young people across West Cumbria.
Rock 24/7 promises an outstanding lineup featuring Jailbird Junkies, 100 Hand Slap, Thy Demise, Drudge, Damaged Goods, Oven, My Silo, No Good Reason, Somethin Brewin, Knuckle Duster and Dejected.
The event takes place at The Solway Hall, Whitehaven, on Saturday 19 September, with doors opening at 2pm and live music continuing throughout the afternoon and evening.
For music fans, it’s a chance to enjoy some of Cumbria’s best live bands. For the local community, it’s an opportunity to make a real difference to the lives of young people and help give children like Marley the support they deserve.
Buy tickets here – with all proceeds going to Marley’s Moves and Rosehill Youth Theatre.
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