I live with a condition called epidermolysis bullosa, which makes my skin incredibly fragile and prone to blistering and scarring. I got a camera for my 18th birthday but could only take photographs for six months before my hands deteriorated, and eventually I couldn’t use them at all. The last few years have been quite tough and I found it hard to stay positive.
However, my life took an unexpected and amazing twist recently when Award-winning design engineer Jude Pullen, from BBC 2’s ‘Big Life Fix‘ team was given the task of making it possible for me to operate his camera by myself again, meaning I would no longer have to rely on my dad, Kenny, to help me take pictures.
Jude built me experimental new equipment to control my new camera – it’s very “futuristic and techy” – controlled via a computer, allowing me to zoom, focus and take photographs via a specially-designed app.
“While I’m here I’m having fun, making memories and leaving something behind – making memories for other people to look at. I want people to remember that this is what I enjoyed and this is where I found happiness.”
I live with my mum and dad, Kenny and Lesley – mum gave up work as a PA to become my full-time carer after I was born. Me and my mum are like best mates. My dad, to give me a great life, would work 12 hours a day, seven days a week – and when he wasn’t working he would take me on photography trips. I can’t thank them enough.
I also want to thank Jack and Tony, from Wirral, who are volunteers for the Remap charity, who are in charge of the aftercare for the camera. They’re from an engineering background and it’s amazing seeing them work and the joy they get from helping people.
Thanks to my customised camera and its associated technology, I will be able to make countless more memories – while continuing to enjoy the best medicine in his life.
“The best medicines in life are positive distractions, laughter and happiness. And photography can distract me to the extent that I can spend eight hours without medicine when I’m taking pictures.”