William Dewar lived with Duchenne muscular dystrophy and sadly died in July 2023 aged 22. Two years later, his parents and two brothers are taking part in the Bidwells Cambridge 10k and 3k in his memory. William’s dad Greg explains why the family want to raise money to ensure others get the support they need to live life to the full.
“Knowing there was someone there in our corner made such a difference”
Our son William was diagnosed with Duchenne muscular dystrophy when he was three and lived with the condition for 20 years, until he died suddenly on 1 July 2023.
“We all miss him terribly, but looking back, at everything he accomplished personally and academically, I don’t think he could have achieved much more.”
And much of this was possible thanks to the advice and support we received from Muscular Dystrophy UK – from explaining William’s diagnosis to helping when we needed to arrange wheelchairs and accommodation.
My wife Tonya and I knew nothing about Duchenne muscular dystrophy before William’s diagnosis so raising awareness is important to us.
When William was at primary school, before he needed a wheelchair, he was often seen as being disruptive and there was a real lack of understanding. But after a conversation with Professor Muntoni, a paediatric neurologist at Great Ormond Street Hospital, about the impact muscular dystrophy can have on behaviour, we worked out that he just needed more structure in his days.
After primary school, William attended Thorpe St Andrew School between 2012 and 2019, and adaptations and reasonable adjustments meant that he was able to finish with three A Levels and a place at the University of Essex to read Sociology. The COVID-19 lockdowns in 2020 meant that he only had a term on campus before having to return home, but he completed the year with a Distinction. He transferred to the University of East Anglia (UEA) to study from home, finishing his final year with the Open University in 2023.
“William was a very determined, forthright young man. He always had a lot to say and said what he thought.”
I’m a Philosophy and Ethics teacher, so we had some interesting conversations! When he was younger, he spent a lot of time in the school library immersed in books – he loved fantasy fiction and was fascinated by all things Japanese.
At the time of his death, William was in the process of arranging the care he’d need to go onto campus at UEA to do an MA in Japanese Studies.
“We found out on the day of his funeral that he had passed his degree with honours, something we announced during the ceremony, and we attended his Degree Ceremony in Ely Cathedral the following year.”
William did everything he wanted to but just ran out of time. The support of his teachers and carers, and from Muscular Dystrophy UK throughout William’s life was invaluable. Without that we would have been alone. I hope that by raising money for the charity, other people living with muscle wasting conditions can get that same support. Knowing there was someone there in our corner made such a difference.
This Cambridge 10k isn’t my eldest son Thomas’s first fundraiser for Muscular Dystrophy UK as in May 2024 he took part in the Great Manchester Run half marathon. But this is the first time we’ve come together as a family to fundraise in memory of William.
Thomas is running the 10k and my wife Tonya and I are taking part in the 3k with our youngest son Benjamin. Benjamin has Down’s Syndrome, with accompanying hypermobility and a ‘limb length anomaly’ meaning one leg is longer than the other. He underwent surgery on his knee in March, which required him to wear a leg brace for several months, and is unable to walk or run very far, so we’re accompanying him on the 3k route with his wheelchair for support.
“It’s really special for us to do this as a family. The boys’ older sister Emily will also be there on the day cheering us on from the sidelines while supervising Benjamin’s puppy Bertie, so it really is a whole family effort!”
Lots of people in the community have been getting behind us and helping with our fundraising, from teachers at William’s old school making donations to local businesses and clubs doing collections and displaying posters. We’re extremely grateful for all their support.
I believe that every day matters and this is especially important for people living with a condition like Duchenne. The right support enriches lives. That’s why we’re doing this, so that others like William can live life to the full.
Support the Dewar family's fundraising
By supporting the family’s fundraising efforts, you’ll be contributing to crucial research and support for individuals living with a muscle wasting condition.
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