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Fenton’s story: “Demelza is a blessing for both of us, a real lifeline”

A mum and her son are hugging each other in a hydrotherapy pool

For mum Sharon, the support she has received from Demelza – a charity providing outstanding clinical care and emotional support to children with serious or life-limiting conditions – was pivotal in being able to switch off from being a carer for the first time in nearly sixteen years.

Her son Fenton is 15 years old and fully quadriplegic with cerebral palsy. His condition means he can’t move his body independently from the neck down. He can’t eat, feed, or bathe himself; he can’t even lift a hand to scratch his nose. He also has severe epilepsy which cannot be controlled and is severely sight impaired. He has had these conditions since birth.

A full-time job

“Despite his severe disability, he’s got a huge personality; when he was little, he was very cheeky and comical, and now he’s your typical moody teenager. He loves to give me a bit of side-eye and a bit of cheek, and as any of the ladies will tell you he’s also a massive flirt!

Caring for Fenton is Sharon’s full-time job. “It can be exhausting, but it’s our ‘normal’. Our house is filled with medical equipment, and I rarely have days to myself – everything revolves around Fenton.

“I can’t even take a long shower in case Fenton has a seizure, so I wash in just a few minutes and then just try and make the most of the warm water until I need to get out and carry on his care.”

A smiling mum and her sitting on a bench, looking at each other with joy.

Meeting Demelza changed it all

“When we had our first respite stay at Demelza, I was terrified – worrying it was going to be the wrong thing, or too much like a hospital. The second we pulled up to Demelza those worries melted away. The nurses came out to greet us from the car, and they knew Fenton by name and spoke directly to him – not at him. It was like a lead coat had been lifted off my shoulders and I could breathe for the first time in years.

During one of these respite stays Sharon had her first bath in nearly 16 years.

It’s the first time I can remember feeling totally unhurried; I was in there for half an hour, then got straight into bed and read a book, then slept for 15 hours! It just let me be me for a while, just ‘Sharon’. It sounds silly but I never would have done that without Demelza.

Sharon, Fenton's mum
A mum in a black top is holding a paper cut-out of a tree to her son who is in a wheelchair. In front of them is an arts and crafts table.

Having care professionals on hand means that Sharon is never worried about his clinical needs. “They are so attentive I just know he will be looked after. He gets so much out of it socially too – he does arts and crafts, or other times he might use the pool (another thing that’s near-impossible in day-to-day life). Demelza is a blessing for both of us, a real lifeline – I don’t know where we’d be without them.”

This #ChildrensHospiceWeek, we’re shining a light on the lifeline care hospices like Demelza give to struggling families every single day. We’re calling on you to celebrate with us, and back our calls so that children’s hospices get the funding and support they need. Because together, we can make sure that every life, no matter how short it may be, is full of joy, of laughter, and of magic.

Family stories