Student’s battle with muscular dystrophy inspires fundraising drive

A Cambridge PhD student who has forged an outstanding academic career despite having a severe form of muscular dystrophy has become the spearhead of a fundraising bid to help others with the condition.

Jonathan Gilmour, who is 27, was first diagnosed with Duchenne Muscular Dystrophy when he was just seven years old. The condition causes the muscles to deteriorate over time, and at the moment cannot be cured. Jonathan has had to use a wheelchair since the age of 14, currently lives with a full-time carer, and has limited use of his arms which means that he needs support to perform basic tasks like dressing and eating.

Now, he and fellow students at St John’s College, Cambridge, have launched a fundraising drive to support the Muscular Dystrophy Campaign. Using Jonathan as its main ambassador, the aim is to raise as much money as possible for the charity, supporting its efforts both to improve the lives of people with the condition, and to undertake research which might eventually lead to a cure.

The limitations of the illness have not stopped Jonathan from becoming an exceptional young academic at one of the best universities in the world. After being encouraged to apply to Cambridge by his mother, he graduated with a First in 2008. He is now studying for a PhD in inter-faith relations, and has won the University’s prestigious Theological Studies Prize on two separate occasions.

He hopes that as well as raising money for the charity, the fundraising campaign will also inspire disabled people to make as much of their lives as possible, without letting the illness restrain their ambitions.

“We’re trying to demonstrate the potential of what can be achieved by people with a disability,” Jonathan explained. “When I first went to university, there was very little information nationally encouraging people with a serious disability to go into higher education. Now it is becoming much more common for people with a condition like mine to study for a degree and beyond.”

“Disability can seem like a permanent barrier, but it doesn’t have to be. People with muscular dystrophy should not feel consigned to living as if it is. I’ve always disliked it when people talk about me being a sufferer – of course it’s frustrating, but it shouldn’t stop you from being able to act positively.”

As a teenager, Jonathan, who is originally from Petersfield, near Portsmouth, never considered applying to Cambridge, but after achieving outstanding results in his GCSEs, his mother, Angela, persuaded him to try. “My Mum was the first person in her family to go to University,” he explained. “I didn’t think I had a chance, but she encouraged me.”

In the event, he won an offer to study Theology and Religious Studies at St John’s, and then passed his A-levels with flying colours despite having to undergo spinal fusion surgery around the time of his exams – an operation which left him in intensive care for 10 days.

Jonathan arrived at St John’s in 2005, occupying a specially-adapted ground floor room in the Victorian buildings of the College’s New Court, where he still lives today. “I was in a chair, but I was more physically mobile than I am now,” he said. “I used to be able to go out at night a lot more, so the experience at the time was really like that of any other student. I was a bit stronger in those days, but you learn to change your lifestyle as things develop.”

Over time, his room has been adapted further, and he has also advised on the implementation of other access measures around the College, parts of which date back to the 16th century. He now lives with a full-time carer, as well as an assistance dog, a black Labrador called Uri.

His academic achievements, coupled with his ongoing battle against what remains a terminal illness, won him the Muscular Dystrophy Campaign’s Young Person of the Year award for 2010/11. Now, they have also inspired colleagues at St John’s and in the wider university to do more to support the charity.

The idea for a fundraising drive initially came from a friend, Albertyna Paciorek, an alumna of St John’s who studied linguistics, and who became friends with Jonathan when they started meeting at lunchtimes in the College’s “buttery” canteen.

After finishing her own PhD, Albertyna decided to run the London Marathon, partly to mark what would have been the 100th birthday of her grandfather, Stanisław Zalewski, a Polish war pilot and concentration camp survivor. She also wanted to do the run on behalf of a charity, which was when she turned to Jonathan for inspiration.

“Jonathan’s experience has made me realise the big difference that even small steps towards treating muscular dystrophy, or improving the lives of people who have the condition, can make,” Albertyna said. “This struck me as something that I could do to make a difference.”

After hearing about her plans, Jonathan decided to lead the fundraising personally. The pair set up a web page for donations and contacted friends through social media. The response from family members and friends was so enthusiastic that Albertyna’s initial ambition, to raise £1,600 by the time of the marathon in April, had been fulfilled well before the end of January.

The early success inspired the pair to up their game, and they are now organising other events to support the Muscular Dystrophy Campaign. This Friday (14 March) will see a fundraiser at the College with performances by the world-famous comedy troupe, the Cambridge Footlights, among others, with other events planned for later in the month ahead of Albertyna’s own marathon attempt.

“The fact that I’ve been able to come here and study at one of the world’s top universities is living proof that the barriers of a disability can be broken down,” Jonathan added. “It’s a life-limiting condition, but living with it is about making the most of things. We hope that our efforts will support the Campaign’s work to maintain the quality of life of other people who have muscular dystrophy, in the same way that they have helped me. One day, a cure will come. Until then, we need to help them to get by.”

To donate to the fundraising bid organised by Jonathan Gilmour and Albertyna Paciorek on behalf of the Muscular Dystrophy Campaign, visit their web page.