I first came across MDUK in 1992, when my son Christopher was diagnosed with Duchenne muscular dystrophy at the age of 5. It came as a shock but MDUK was there for us and provided help and information in the early days.
We’re lucky to have had 34 wonderful years with Christopher – he left us last year. He was a wheelchair user and he taught us a lot – the importance of patience, dealing with the cards you’re dealt and getting on with things. He did well in school and enjoyed a good life.
In the years since Christopher’s diagnosis, I’ve been volunteering for MDUK by doing bucket collections across the country (at railways, events and supermarkets), and fun runs to fundraise. I’ve taken part in the annual Oxford Town and Gown races since 1988. Christopher used to join me in the runs – either with me or my other son Michael pushing him. I’m not the fittest runner so I’ll often take my place at the back.
I volunteer for MDUK because I want to do something to help. I want to raise money for a worthy cause but also to raise awareness of the way that muscular dystrophy can change lives. The money helps to fund equipment, treatments, research and other means to fight these conditions.
At first, I used to just turn up in a branded t-shirt and shorts, and I’d raise a few quid. Then I wore a St Trinian’s outfit and that brought in a good £600 one year. I also tried out a ballerina costume, dressed as a cow girl, and scullery maid.
One year someone lent me a Wonder Woman costume. They said, if you can fit in it, you can wear it, which encouraged me to lose a few pounds. When I went out dressed as Wonder Woman, that brought in the big bucks. A big 6ft man dressed as Wonder Woman really gets attention and gets people talking! Most people stop and ask why I am dressed this way, so I tell them about the condition and ask if they’d like to donate. They often do. I’ve had a lot of wolf whistles in my time; I’ve stuck with the Wonder Woman outfit ever since, and I’m now onto my third Wonder Woman costume.
In 2014 I was named charity ‘champion’ for my efforts and presented with an award by BBC’s Sue Barker. It was great to meet her and she was amused as I brought a portfolio of pictures to show her.
Now more than ever I want to go out and raise money so other children and families don’t have to go through what we have been through. I’m volunteering and fundraising in Christopher’s honour. I am happy to attend any local events to do a charity collection, such as fetes or music festivals. If anyone wants to donate a black wig, tights or make up, I’ll also welcome those donations to keep my look going strong!
If you’d like to volunteer with muscular dystrophy, please get in touch at volunteering@musculardystrophyuk.org