On Sunday 15 October Angela, with her husband Brian, will officially start Bidwells Cambridge Town and Gown race in memory of their ‘inspirational’ son Jonathan. Jonathan lived with Duchenne muscular dystrophy for nearly 30 years. A Cambridge university PhD student and award winning academic and supporter of the charity, appearing in the BBC’s Lifeline appeal, he wanted to be remembered for his ‘ability not his disability’.
A mother’s instinct
Call it a mother’s instinct but I knew something was wrong, even before Jonathan was born. As a child he was often clumsy, would fall over, couldn’t walk very far, or when he did it was with a waddle. We went back and forth from the GPs – they thought he was flat footed at first. We were referred to a paediatrician who diagnosed Jonathan with dyspraxia. After pushing for answers, as something didn’t sit right, it was finally confirmed Jonathan, aged seven, had Duchenne muscular dystrophy. It was a complete shock. We didn’t know anything about muscular dystrophy.
Living with muscular dystrophy
We discovered Muscular Dystrophy UK at the first consultant appointment. Their family support officer gave us accurate information about Duchenne – at that time the only information was in outdated medical textbooks in the library. There was no internet in those days! We then attended a support group, run by a local family whose son had Duchenne.
It was hard at first, we didn’t want to see people with the same condition. We didn’t want Jonathan to either – it was like looking into his future. For a long time, he didn’t know the name of his condition, only that he had poorly muscles although we continually drip-fed him information that was age appropriate.
When he was a teenager, he did his own research. He read about the diagnosis and the long-term prognosis. When diagnosed, we were told his life expectancy was only teenage years – he must’ve been 12 years old and reading that he was unlikely to live till he was 20. It was hard for him to take in.
Before Covid, and beyond
It was hard for Jonathan during the pandemic. In March 2020 when it hit, he returned home from university to shield as he was clinically extremely vulnerable. He continued his PhD at home but all he could think about was going back to Cambridge where he studied.
Sadly, though by Christmas 2021 he became ill. Jonathan was in hospital for several weeks. He had an infection that turned out to be Pseudomonas, a pneumonia-like infection that didn’t respond to antibiotics. His heart had also deteriorated .Every time they were on top of things, symptoms would come again, and his infection markers would increase. Unfortunately, after trying every antibiotic available it wasn’t treatable, and Jonathan sadly died on Friday 15 April 2022.
Losing a child with Duchenne
It was incredibly hard to lose Jonathan but with Duchenne you always expect it. He had been ill and hospitalised several times, but he was like a phoenix who always rose up from the ashes.
When you have a child diagnosed with Duchenne, you grieve from that point onwards. Every day you are fearful of things going wrong and every birthday is a reminder of how the timer is ticking down towards an inevitable death at a young age. As Jonathan got older, we began to dread hospital check-ups as they only ever showed further decline. We did our best to reassure Jonathan and to keep both him, and us, positive.
Jonathan did well to reach the age of 35. He’d a slower progression then some people with Duchenne.
But by the time he died Jonathan was severely disabled. He couldn’t move a muscle unaided-he couldn’t breathe without a ventilator, couldn’t swallow or cough and speaking was hard due to the ventilator.
From one mother to another
We focused on all the things Jonathan achieved – which was against the odds of what you’d expect from someone as physically disabled as he was. Don’t assume your child is not going to have a good life just because you received that diagnosis. It’s important to remember to try to live the life that your child actually has, not grieve the one they don’t! As a friend once told us ‘It’s not the years in your life that count, it’s the life in your years”.
See ability and not disability
We always encouraged Jonathan to look to what he could achieve and not back at what he’d lost. Jonathan’s life mantra was for people to see his ‘ability’ and not his’ disability’ – as there was more to him than this.
He wanted to prove that a disabled person could do all things, rather than dwell on their disability. He was weeks aways from submitting his PhD but as he couldn’t do his VIVA ( face-to-face exam) they weren’t able to award it, but it did get published. His next dream was to become a supervisor and then a Junior Fellow at Cambridge.
An honour to open Bidwells Cambridge Town and Gown
Officially starting the race in Jonathan’s name, is just perfect. It links his love for Cambridge, as he was a Gown through and through, along with highlighting a cause he lived with for years. Jonathan would watch the event, so he’d be thrilled to know that it’s being started in his memory.
Good luck to everyone giving up their Sunday to raise money for a condition, that our son had, we’re grateful for your support and every 10k makes a difference.
Thanks to everyone participating on Sunday 15 October. If Angela’s story has inspired you to go the distance, sign up today to Bidwells Cambridge Town and Gown.