On Sunday 27 April, Ben Pusey is taking part in the London Marathon. He’s running in memory of his brother Lewis who lived with Duchenne muscular dystrophy and sadly died at the age of 14. Ben explains why he wants to do this to mark the 20th anniversary of his brother’s passing.
“Inspired by his courage”: Running the London Marathon in memory of my brother
I remember having a happy childhood with my two brothers, Lewis and Josh. Some people may not understand this, but I never saw Lewis as having a disability. Yes, he was in a wheelchair, but he was just my big brother, and we did all the usual things siblings do. We played PlayStation together, went to the cinema, played football in the park – he used to be the goalie in his wheelchair! He loved the Lord of the Rings and was a big Manchester United fan.
“I didn’t look at our life as being different, but Lewis was facing daily challenges.”
Lewis was four when he was diagnosed with Duchenne muscular dystrophy and started using a wheelchair shortly after. As we grew up, unlike my younger brother Josh and I at the time, Lewis knew exactly what his condition meant. But he never showed he was struggling despite the challenges he faced.
“This year will be 20 years since Lewis sadly passed. I was just 12 at the time, and it was only after this as I got older that I fully understood the condition he was living with.”
I have always been incredibly inspired by the courage and bravery he had to not let his diagnosis change his outlook on the world. I know that if I can have just an ounce of that mindset on the day of running the marathon, then it’ll be a walk in the park.
I’ve done charity fundraisers before, including walks, a skydive and a 10k inflatable obstacle course, but this will be my first marathon. By fundraising, I hope to help MDUK fund research and provide life changing support to the thousands of people like my brother, who are diagnosed with muscle wasting conditions.
This year is particularly poignant as it’s the 20th anniversary of my brother’s passing. To acknowledge this unimaginable milestone, I wanted to push myself so signed up to run the London Marathon.
“I haven’t done much running before, and I know the 26 miles will be a considerable mental and physical challenge. But it feels insignificant compared to the challenges faced by my brother and others who live with this life-changing diagnosis.”
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