How a Local Community Supports a Child with Duchenne Muscular Dystrophy

The phrase “it takes a village” gets tossed around a lot. But in Codicote, that’s what’s happening. Fundraising events and challenges are being held left and right. All of them aim to help out a five-year-old boy named William Eames. William received a diagnosis of Duchenne muscular dystrophy at age three. Keep reading to learn about his story and how his community supports him. Follow along at the original source for additional details.

Duchenne muscular dystrophy is a genetic disorder which causes muscle weakness. It’s progressive, and ultimately fatal. This means William fights just to move around like most other kids his age. William received his first wheelchair recently. Soon he will be dependent on it. By the time he hits 12 years old, it’s likely that the wheelchair will be his only viable form of movement.

Ever since the diagnosis two years ago, William’s family has been committed to fundraising and spreading awareness for the charity organization Action Duchenne. Now, the family accepts donations to create the best life possible for William. There’s no other way they can keep up with the costs of adapting their home to William’s needs.

Many of the family’s friends and families have contributed. Two close friends of the family planned a charity rappelling event to take place at the Orbital. Fundraising meals also drew crowds. Altogether, the events have been successful. The family still, however, needs about £50,000.

The house needs various changes in order to accommodate a wheelchair and the other equipment William needs. The doorways will need to be wider, and another front door will need to be installed.  All of these fixes and more will make William’s life more comfortable and enjoyable.

William’s parents, Jo and Matt, started living in Codicote 10 years ago. William attends primary school there now. The support of their community surprised them– they were blown away by the kindness and attentiveness of their neighbors.

At first, the family said, asking for help was difficult.

“Accepting we needed help from our friends and neighbours so we could give William everything he needed was really hard,” says William’s Mother, Jo.

Even with all the support and generosity the family found in their community, it still hasn’t been easy adjusting life to Duchenne muscular dystrophy. Beyond the natural range of emotions that come with a rare diagnosis, there are a lot of changes that need to be made so that William can live with independence and an enjoyable quality of life.

Even so, the response from family and friends has been nothing short of amazing. More events are already planned for May and April. If you would like to donate, check out the events, or keep up with the family, you can find more information on the Facebook page “Defending William Against Duchenne.”

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