Evan Winter was diagnosed him with Duchenne muscular dystrophy (DMD) earlier this year which only around 2,500 people have in the UK – his family are now raisng funds to build a safer future for their son
A seven-year-old boy has been diagnosed with a rare muscle-wasting disease after getting severe leg cramp at a birthday party.
Evan Winter was slow to progress as a baby and did not walk until 20 months old and was clumsy. His mum, Laura Winter, 31, thought he was just “a little bit lazy” and his toe-walking was related to his autism diagnosis.
In February 2025, Evan developed severe leg cramp at a laser tag party and when he was still limping the next morning his parents rushed him to the GP who diagnosed him with Duchenne muscular dystrophy (DMD).
The genetic condition causes progressive muscle degeneration and typically leaves children fully reliant on a wheelchair and round-the-clock care by their early teens.
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Evan’s family are desperate to raise funds to build a new purpose built home that is safe for him. Laura, a disclosure risk assessor at Kent police, from Maidstone, Kent, said: “He was very delayed as a toddler, so when he did start walking he would complain constantly ‘my legs hurt, my legs hurt’.
“He would say ‘carry me, carry me’ but we thought he was just being a typical toddler. But we were always told it was because he’s autistic – that toe-walking and tiredness were just part of that.”
She added: “Every time we mentioned the cramps or his walking they just said autistic children often walk on their toes or he was just cautious. We had no idea what DMD even was. We had never heard of it.”
Laura said: “It was a complete shock. Even though we had a few weeks to process it, I think there was still hope that it could be something else. I remember asking our GP afterwards, ‘Did you think it was this?’ She said no, she thought it might have been a vitamin D or calcium deficiency. She’d been a doctor for 30 years and had only ever seen one DMD patient.” Since the diagnosis, Evan’s world has changed dramatically. He now uses a wheelchair for longer trips and is about to begin steroid treatment in an effort to slow the condition’s progression.
She said: “He said, ‘I think it’s Duchenne. I might be wrong, but I don’t think I am.’ We still had to wait for a formal diagnosis, but I think we knew by then.”
The family received the official diagnosis of DMD, after Evan had received blood tests, on March 25, 2025. Laura said: “It was a complete shock. Even though we had a few weeks to process it, I think there was still hope that it could be something else.
“I remember asking our GP afterwards, ‘Did you think it was this?’ She said no, she thought it might have been a vitamin D or calcium deficiency. She’d been a doctor for 30 years and had only ever seen one DMD patient.”
Since the diagnosis, Evan’s world has changed dramatically. He now uses a wheelchair for longer trips and is about to begin steroid treatment in an effort to slow the condition’s progression.
More than £1,000 has already been raised through their GoFundMe page and the family hopes this will be the start of building a safer future for Evan. Laura wrote: “We never imagined we’d have to ask for help like this. But we will try with everything we have to give Evan a safe and comfortable home, where he can have the best childhood, we can give him.”
You can donate to the GoFundMe page by clicking here.