Dedicated Rugby mum raises thousands after son’s rare muscular dystrophy diagnosis

Hayley Lloyd, Maggie Paul, Community Champion at Tesco, Sally Grant & Tommy
Hayley Lloyd, Maggie Paul, Community Champion at Tesco, Sally Grant & Tommy

A determined mum is raising money for charity after her young son was diagnosed with an extremely rare muscle-wasting condition.

Hayley Lloyd, of May Lane, Bilton, has been holding a variety of events to raise awareness of her son Tommy’s condition after he was diagnosed with muscular dystrophy aged seven.

Following in his mum’s fundraising footsteps, ten-year-old Tommy took on a bath of beans challenge at Tesco in Leicester Road on Saturday.

He sat for four hours and raised more than £500.

Money raised will go to Muscular Dystrophy UK, a charity that supports people affected by muscle-wasting conditions.

There is only one other person in the UK with Tommy’s condition.

Hayley said: “Tommy is such a positive, cheeky boy and I am so proud of him.

“Right now he is able to walk and be out and about, but we know that sadly that won’t last and he will need a wheelchair.

“There’s no cure or treatment for what Tommy has and that’s why it’s important to us to raise funds for research and hopefully get closer to being able to cure muscular dystrophy.”

The devoted single mum raised more than £8,500 for the charity in 2014, and has raised £1,700 so far this year.

Hayley, 40, said Tommy’s diagnosis came as a huge shock.

“Tommy always walked on his tip toes so we went to the doctors to try and get that sorted out and after trying a few things that didn’t work they did a blood test.

“They told us he had a muscle-wasting disease and would eventually need a wheelchair. It was devastating and shocking news, but now we take every day as it comes and remain as positive as possible.”

Hayley recently turned an online shopping blunder into a fundraiser after she ordered a new blind in millimeteres instead of inches. The miniature blind will now be sold by makers Tuiss and money will be donated to Muscular Dystrophy UK.

Gogglebox and Celebrity Big Brother star George Gilbey recently presented Hayley with the blind. The pair met last year after Hayley tweeted him asking him to join her on a charity skydive. The duo celebrated Hayley hitting her fundraising target with a date.

Tommy will be running a ‘mile of a marathon’ at the end of this month with other MD sufferers.

Hayley is taking on a half marathon in October.

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