Living life to the full: Charlotte’s story

Charlotte’s condition falls under the muscular dystrophy umbrella, and she spent the first four months of her life in hospital.  

That makes caring for Charlotte challenging. And it’s why she receives regular care from East Anglia’s Children’s Hospices (EACH) at The Treehouse, in Ipswich. 

Charlotte was keen on the Ipswich location because she thought it gave her more chance of meeting Suffolk superstar – and EACH Ambassador – Ed Sheeran!

The Treehouse is a dedicated facility for children and young people, with five bedrooms and accommodation for families to stay overnight. There’s also a multi-sensory studio, hydrotherapy pool, music room, play areas, sensory garden, a woodland walk and specialist outdoor play equipment.

Charlotte has been a popular visitor there for the last three years. She’s well-known by the care team for her friendly, cheerful personality.

Jenny McClure, a Care Assistant at The Treehouse, loves working with Charlotte:

“She’s just a lovely little girl…she comes in and everyone’s really happy to greet her. We’re all looking forward to her stay because she keeps us so busy!”

Charlotte says that she particularly enjoys the hospice’s woodland garden:

“I smell the flowers and plants and I like that it’s nature in the woodlands. 

“My favourite thing is music therapy and I like using different instruments, especially the keyboard. It makes me happy.”

Charlotte admits being nervous when she first started coming to The Treehouse. But she loves her time there.

That became especially helpful during a prolonged spell of illness in 2022.

Even when she felt better, she couldn’t go to school because her immune system wasn’t strong enough.

That’s where the hospice stepped in, providing extra sessions and support.

Jenny adds that she thinks it’s the freedom and fun that Charlotte enjoys at the hospice that really makes a huge difference to her – in a life that’s otherwise constantly focused with care and medications:

“Charlotte’s life is all about her health needs, so when she comes here, it’s all about fun. 

“All of those medical things become insignificant when she’s here because she can just focus on having fun and she’ll tell you herself, she just comes here for a little holiday.”

Nova is Charlotte’s mum. She’s been with Charlotte through a continuous cycle of ups and downs with her health, and describes her daughter as “resilient, pragmatic and robust… an absolute trooper…[who] fights with all her might.”

And it’s not just Charlotte’s attitude to living with the rare condition that’s special – it’s also the sense that Charlotte is an old soul with a mature way of seeing things. 

Jenny adds that she ‘couldn’t believe’ she was talking to an eight-year-old when she met Charlotte: “She was so mature in the way she speaks, her understanding of everything you care to talk about really.”

And Charlotte agrees – that despite her age, “people say that I act like I’m 30!”

That doesn’t mean that Charlotte doesn’t enjoy a joke…describing why she likes working with Care Assistant Jenny: “I like that she winds me up, and she teases me, and I like that she’s caring and she’s fun.”

And Jenny adds that she adores Charlotte’s lovely personality: 

“You can’t avoid falling in love with Charlotte. She’s just a little sweetheart.”