East Anglia’s Children’s Hospice making a 'life changing' difference for 11-year-old Peterborough boy with rare Duchenne Muscular Dystrophy

A Peterborough 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 EACH’s Milton base since January 2023.

Duchenne muscular dystrophy (DMD) is a genetic disorder characterised by progressive muscle degeneration and weakness due to the alterations of a protein called dystrophin that helps keep muscle cells intact.

Mum Donna describes the EACH venue 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.

Donna (42) said: “I was terrified and my brain automatically took me to a place where I could only think of children dying.

“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.”

Diagnosis made at Peterborough City Hospital

Harry was two and a half when he was diagnosed with Duchenne Muscular Dystrophy.

He 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.”

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

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.”

For more information about EACH, including forthcoming events and how you can help raise funds, visit www.each.org.uk or call our fundraisers on 01223 800 800.