Codicote villagers rally round to support five-year-old with genetic disease
- Credit: Picture: DANNY LOO
Neighbours, friends and family are rallying round to support a Codicote family dealing with a devastating genetic disease.
Fundraising challenges and events are all being staged to support five-year-old William Eames, who was diagnosed with Duchenne Muscular Dystrophy (DMD) when he was just three.
DMD is a fatal genetic disorder which causes progressive muscle weakening, meaning William struggles to get around as well as other children.
He has just received his first wheelchair and will become more and more dependent on it in the coming years.
It is likely to be his only way of getting around from the age of about 12.
The vast majority of children affected by DMD are boys.
It is an incurable disease which also affects the muscles around the heart and it is rare for those who develop it to live beyond their twenties.
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William’s family, having spent two years raising funds and awareness for the charity Action Duchenne, are now accepting donations so they can adapt their Codicote home to give William the best possible quality of life.
Friends and family have swung into action, organising a charity abseil down the Orbital in May as well as a series of other fundraising meals and events.
William’s family have sourced a large amount of the funding needed for the adaptations to their home but need a further £50,000 so that building can start, and be completed in time to keep up with William’s needs.
Adaptations include widening door frames and creating a separate front door.
William’s parents, Jo and Matt, have lived in Codicote for the past 10 years and William goes to the village primary school.
They say they have been “overwhelmed” by the response from everyone wanting to support them.
Jo, who is a stay-at-home mum due to William’s condition, said: “Accepting we needed help from our friends and neighbours so we could give William everything he needed was really hard.
“We’ve had to come to terms with a lot of changes since William’s diagnosis and now we’re preparing for another big one – changing our home so it is somewhere we’ll be able to properly care for William and give him some independence as he grows up.
“The response from people wanting to help us has been amazing but sadly we have some way to go before we’ll be able to get the work under way.”
Jo’s friend Vikki Francis, who is organising the abseil in May, said: “I thought hard about what I could be sponsored to do to raise money for William, and decided to go for something that is going to terrify me but will hopefully be fun too.
“I’m used to running marathons and competing in other extreme races but abseiling is going to scare me to death – I’m looking forward to having lots of other people with me so we can support each other when we’re at the top!”
The abseil is taking place on Sunday, May 20.
William’s parents are also holding a fundraising dinner and auction on April 28 at the award-winning M Restaurant in Victoria.
Anyone interested in signing up for an event or in making a donation can find all the details on Facebook at ‘Defending William against Duchenne’.
Approximately 2,500 children and adults in the UK are living with Duchenne, and it is a condition that does not always get diagnosed quickly.
Jo, 37, said: “I spoke to the GP and said he needs to see a specialist.
“I knew something wasn’t right, but didn’t know what.”
Since William’s diagnosis, Jo feels she has become a specialist in the condition after doing so much research.
On one occasion the family received a phone call in the middle of the night after blood test results had come through.
They were told to rush William to A&E, but it turned out the trip was unnecessary and the abnormal results were simply down to his condition.
Jo said receiving a phone call like that makes your “heart sink” but she now realises how misunderstood Duchenne can be even among health professionals.
That being said, Jo has nothing but praise for the care William has received.
“The NHS is brilliant.
“The care he has received has been amazing,” she added.
William sees a cardiologist, a respiratory specialist, an occupational therapist, community paediatrician, and a specialist neuro muscular consultant.
For more information about Duchenne Muscular Dystrophy, visit https://www.actionduchenne.org/Pages/FAQs/Category/what-is-duchenne