Harry’s story

Est. read time: 3-4 minutes.

A mum whose son lives with a genetic muscle disorder has spoken of the lifechanging care and support they receive from East Anglia’s Children’s Hospices (EACH).

Harry Crofts, 11, has Duchenne Muscular Dystrophy and has been a regular visitor to Milton since January 2023.

Mum Donna describes it as his favourite place – somewhere he has fun, makes memories and feels less isolated, thanks to meeting other children in a similar situation.

She believes it has “opened a whole new world” for them but admits her initial reaction, when being told about the hospice, was far from positive.

“I was terrified and my brain automatically took me to a place where I could only think of children dying,” said the 42-year-old, who lives in Peterborough.

“Wrongly, there’s a stigma and I was reluctant, to say the least.

“I kept putting it off and my gut instinct was that we weren’t ready for it.

“However, I don’t mind admitting I was completely wrong and had no idea about the services and facilities EACH provides.

“It’s opened up a whole new world and is definitely one of the best things we’ve ever done. We’ve both benefitted tenfold.

“Harry’s embraced the whole experience and absolutely loves his time at Milton.

“What EACH provides is out of this world, giving him things I can’t offer, and he beams all the way there and all the way home.

“It’s his favourite place and has changed our lives forever.”

Harry, who goes to school in Wisbech, was two and a half when he was diagnosed with Duchenne Muscular Dystrophy.

A genetic condition, it gradually causes muscles to weaken, leading to an increasing level of disability.

It is a progressive condition, which means it gets worse over time.

Harry was not meeting the normal milestones and a blood test led to him being referred to Peterborough City Hospital.

It was his physiotherapist who then suggested getting in touch with EACH.

“He’s my shadow and I’m so proud of him,” added Donna.

“Life can get you down but only if you let it. Instead, we roll with the punches and do our very best to enjoy every day together.

“My mentality is that life’s for living and that seems to align with the way things are done at EACH.

“It’s about having fun and making memories and I can’t praise the care team enough. I haven’t got a bad word to say.

“Spending time at the hospice has also shown him he’s not the only young lad in a wheelchair, as was the case at his mainstream school.

“He felt different there but now he’s made friends with other children in a similar situation.

“He doesn’t feel isolated and neither do I, because now I’m able to talk to other parents and learn more.”

Harry was still able to walk when first diagnosed and only started using a wheelchair last April.

His goal for this year is to have overnight stays at Milton.

“It’s something we’re working towards and building up to,” said Donna.

“Hopefully it will happen, for his sake, because he really loves his time at the hospice.

“He enjoys so much about it, from playing games – both online and board games – music therapy, hydrotherapy, arts and crafts and exploring the gardens.

“It’s a marvellous, beautiful place and the staff feel like family.

“They’re amazing people and go to such trouble and effort to give children and families the best-possible experience.

“As a parent, it’s heartwarming and such a blessing to be able to leave him somewhere he’s happy, safe and content.”

Published in March 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.

My mentality is that life’s for living and that seems to align with the way things are done at EACH.

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