Charlotte’s story

Est. read time – 2-3 minutes.

Charlotte Freegard is a spirited ten-year-old who lives life to the full.

Fun-loving, chatty and confident, she has the rare genetic muscle disorder Nemaline Myopathy and receives care from East Anglia’s Children’s Hospices (EACH) at The Treehouse.

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

She particularly enjoys music therapy, arts and crafts, baking, playing board games and using the swing in the hospice garden.

“I love it there,” said Charlotte, who lives in Halstead and is an enthusiastic pupil at Southview School, in Witham.

“I enjoy lots of different things and everyone is kind to me.

“The staff are really nice and I enjoy chatting to them. I also like baking – especially breaking eggs – and making cookies for the carers and nurses.

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

Charlotte, who has two older sisters, started receiving care from EACH after moving to Halstead, having previously used the services at Little Havens hospice, in Southend.

She could have continued to go there, gone to The Treehouse or EACH’s Cambridgeshire hospice at Milton.

However, she chose the Ipswich base because she thought it gave her more chance of meeting Suffolk superstar – and EACH Ambassador – Ed Sheeran!

Charlotte’s condition comes under the muscular dystrophy umbrella, although there was a spell early on when doctors feared she had Spinal Muscular Atrophy (type one).

She spent the first four months of her life in hospital but, thankfully, her health improved and a muscle biopsy eventually led to a diagnosis of Nemaline Myopathy.

The condition causes muscle weakness throughout the body, but is typically most severe in the muscles of the face, neck and limbs.

Charlotte admits being nervous when she first started coming to The Treehouse but loves her time there and it was especially beneficial during a prolonged spell of illness in 2022.

Even when she felt better, she was still unable to go to school because her immune system wasn’t strong enough and it felt like a second lockdown.

However, support was at hand and she enjoyed extra sessions at The Treehouse.

Mum Nova said: “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.

“I’m so proud of her because she’s an amazing, upbeat and positive little girl.

“In terms of her health, it’s a continuous cycle of ups and downs.

“She’s been through so much and winter is especially hard, but she’s so accepting of her condition.

“Of course, she gets fed up of being ill but quickly bounces back and dusts herself down.

“She’s so resilient, pragmatic and robust. She continues to defy the odds but is an absolute trooper and fights with all her mite.”

Published in May 2024

Families’ stories and experiences are unique to them and we have been kindly granted permission to share this family’s story. If you have been affected by what you’ve read or have a question and would like to talk to someone, please contact your local children’s hospice service or Together for Short Lives, the UK charity that supports families caring for seriously ill children (tel: 0808 8088 100).

Would you like us to write and share your own family story?

We give all those receiving support from EACH the opportunity to share their family story. All family members are welcome to get involved if they’d like to and we will never share your story until you are completely happy with it. If you have any questions or are interested in finding out more, please contact Matt Plummer, EACH Media and PR Manager at matt.plummer@each.org.uk.

I’m so proud of her because she’s an amazing, upbeat and positive little girl.

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