Charlotte is no ordinary ten-year-old: she lives with a rare genetic muscle disorder, which requires specialist care. For Children’s Hospice Week, we find out how East Anglia’s Children’s Hospices (EACH) works with Charlotte to help her live life to the full.

This story was originally published by East Anglia’s Children’s Hospices.

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'Fun loving, confident, chatty'

Like many children of her age, Charlotte is fun-loving, chatty and confident. She likes arts and crafts, baking, playing outside on the swing, and board games.

But Charlotte isn’t like other children. 

She lives with the rare genetic muscle disorder, Nemaline Myopathy, which causes muscle weakness throughout her body, especially in the face, neck and limbs.


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


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 loves to bake during her visits to East Anglia Children's Hospice's The Treehouse
Charlotte loves baking...and breaking eggs

Loving her time there


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.

Freedom and fun


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.”

‘An absolute trooper’


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. 

Charlotte receives care from East Anglia's Children's Hospices - her mum Nova says “She speaks to people like an old friend, interacting and remembering things they say. She’s got a great memory.”

“People forget she’s only ten, because of the way she engages and shows maturity beyond her years.

“She speaks to people like an old friend, interacting and remembering things they say. She’s got a great memory.” ~ Nova, Charlotte's mum


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.”