Codicote mum 'overwhelmed' with £150k house revamp help for son with rare disease

PUBLISHED: 12:32 09 September 2019 | UPDATED: 12:32 09 September 2019

William Eames with mum Jo while on holiday in Turkey this summer. Picture: Jo Eames

William Eames with mum Jo while on holiday in Turkey this summer. Picture: Jo Eames

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A Codicote mum has thanked businesses for their help on a £150,000 home revamp designed to help her six-year-old son.

William Eames, second from left, with fellow Codicote CoE Primary School pupils during a summer sports day. Picture: Jo EamesWilliam Eames, second from left, with fellow Codicote CoE Primary School pupils during a summer sports day. Picture: Jo Eames

William Eames was diagnosed with Duchenne Muscular Dystrophy (DMD) when he was three - with the surrounding community subsequently helping raise more than £45,000 to help fund house renovations that will make his life easier.

The rare genetic disease causes progressive muscle weakening, meaning William struggles to move as well as other children, and will likely be wheelchair bound by the age of 12.

More than 15 businesses charging the lowest possible rates have thrown their weight behind the project, which will see doorways widened, big steps removed, a three-floor lift installed, and the bathroom converted into an accessible wet room.

William's mum, Jo, said: "It's just a sense of being totally overwhelmed and grateful because ultimately they are making our lives a hell of a lot better."

William Eames, pictured during a summer family holiday to Turkey, has Duchenne Muscular Dystrophy - a rare genetic disease which causes progressive muscle weakening. Picture: Jo EamesWilliam Eames, pictured during a summer family holiday to Turkey, has Duchenne Muscular Dystrophy - a rare genetic disease which causes progressive muscle weakening. Picture: Jo Eames

Jo, who is a stay-at-home mum due to William's condition, has lived in Codicote with his father Matt for 11 years, and the pair also have a four-year-old daughter named Phoebe. The family is currently living with her parents in Hertford and expect to move back home next month.

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Following World Duchenne Awareness Day on Saturday, September 7, Jo said most people are still unaware of the disease, which around 2,500 children and adults are living with nationwide.

It first appears in early life and is usually diagnosed around the age of four - with the only available treatment working in just 13 per cent of cases.

The incurable condition also affects muscles around the heart, and it is rare for those who develop it - the vast majority of which are boys - to live beyond their 20s.

Jo said it is "heartbreaking" knowing that William's condition will continue to deteriorate.

"Our life isn't what we thought it was going to be," she said. "I personally as a mum have some really down days when it really hits you - like when you see him unable to run off with his friends at the playground."

As part of his treatment, William - who attends Codicote CoE Primary School - sees a cardiologist, respiratory specialist, occupational therapist, community paediatrician, and a specialist neuromuscular consultant.

For more information visit facebook.com/DefendingWilliamagainstDuchenne.

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