Anne shared her emotional story with thousands of people when she officially started this year’s Bidwells Oxford Town and Gown last Sunday, 14 May 2023.
Receiving Paul’s diagnosis
My Paul was born prematurely, and it was picked up that he had a heart murmur, so we were put under the care of the local hospital. It was only when Paul attended primary school that we started to notice a real difference between him and other children’s development.
We were referred to Great Ormond Street Hospital following his delayed movements. It was a long process, but finally after years of not knowing, he was diagnosed with a muscle-wasting condition at age nine.
First, he was diagnosed with Becker muscular dystrophy, then when he was 11, he received another diagnosis of Duchenne muscular dystrophy. It appeared he was on the border line of both conditions.
Paul’s passion for change
Paul went to mainstream school, sixth form college, and then to University of East London (UEL) to study Media, gaining a 2.1 in his degree. During his studies, he was passionate and wanted to educate people about muscular dystrophy; helping them to understand the condition better. Even his dissertation focused on this; it was called ‘Walking with Wheels’. Following his graduation, he decided to be a journalist and completed a further year’s course in journalism at a local college.
Paul had a passion for writing and got his dream job as a journalist for our local newspaper, where he worked for over 12 years. He loved to campaign for the cause and wanted to make a difference for others living with muscular dystrophy. His colleagues were all fond of him, they had nicknames for each other – he was known as Wheels. He loved the comradely.
He wrote his last article two days before passing, but sadly he never got to read the published version, so we included a copy in his coffin.
Throughout his life he was resilient. He lived his life to the full, and despite living with the condition would remain upbeat.
Losing our “beloved” son
Towards the end Paul was suffering with numerous chest infections and had dilated cardiomyopathy. His heart function had dropped to 38% functionally for a number of years. He was under the cardiac unit, and with his heart functionally continuing to decrease we knew that the end would be in sight.
A few weeks before he passed away, he told us that he had planned his own funeral and wanted to write a will to support his two godsons. Before he died, he made me promise that we, as a family, would go on and have a good life.
We were there when he took his last breath on 30 July 2014, aged 34. It’s a day I will never forget.
He wanted us to wear our best party outfits and to celebrate his life at his funeral, with his favourite songs played, including ‘Celebration’ by Kool and The Gang and ‘The One and Only’ by Chesney Hawkes.
The words of Chesney’s song expressing, ‘there is no one else I’d rather be’. Paul said that if he had his life again, he would not change a thing, not even living with muscular dystrophy. His strength of mind was, and still is, an inspiration to many.
He had a wicked sense of humour and an infectious smile, and we miss him every day.
A fundraising mission inspired by grief
It only seemed right to continue to do all we could as a family to support MDUK in Paul’s memory, to help raise awareness and much needed money to fund research into new treatments and ultimately find a cure for future generations.
Collectively, since losing Paul, we’ve raised over £188,000 to date to help MDUK’s vital work. Over the years we’ve taken part in hosting an annual fundraising night, running London Marathons, skydiving, abseiling, and organising quiz nights. We’re grateful to every single person that has supported us over the years and who continues to do so – we couldn’t do this without our loyal supporters.
An honour to open Bidwells Town and Gown
I had the pleasure of being the official race starter at this year’s Bidwells Oxford Town and Gown for both the junior 3k race and adult 10k, which saw 5,000 people take part in the biggest event to date and raised £200k.
It was a true honour to be able to start the event. It was an incredible day. It would have made Paul proud, and he would be looking down smiling.
During his funeral service a poem called, ‘Smile,’ written by Spike Milligan, was read, which fitted Paul so well. I shared this with the thousands of runners that took part to give them some words of encouragement, and I played the songs that Paul adored as they started the course.
Thanks to everyone who completed Bidwells Oxford Town and Gown. If Anne’s story has inspired you to go the distance, why not sign up to Bidwells Cambridge Town and Gown on Sunday 15 October.