A determined dad will run the London Marathon to raise awareness of a condition that could leave his son blind by his early twenties.
Nick Vaughan will pound the streets of London for RP Fighting Blindness on April 22 because his son, Chris, suffers from retinisis pigmentosa – a genetic eye disease which gradually leads to a reduction, and then complete loss, of vision.
Nick, 44, has racked up over 250 miles of training for what will be his first marathon, but he insists he is more concerned with raising his £2,500 target and some much needed awareness rather than the time he sets.
Nick said: “I just want to get round the course. The longest distance I had ever done before I started training in November was about five miles, but now I’m up to 18. I’m running it with a family friend and Chris is very proud of what we’re doing.”
Chris, 16, was just five when he was diagnosed with the condition, which causes a deterioration in the retina.
At the time doctors said Chris was on course to lose his sight completely by age 25.
Until recently there was no treatment, but stem cell trials are now beginning to take place to try and discover a cure.
“One thing we found when Chris was diagnosed was that the knowledge of the condition was pretty poor,” said Nick.
“But things have improved and through stem cells treatment some people are starting to have parts of their vision returned, but it’s a long process.”
Chris, who lives in Holly Bank Park, Rastrick with his dad and mum, Jacqui, is studying A-levels in history and business at New College in Huddersfield.
He has already started to lose much of his peripheral vision and walks using a stick. It is expected he will ultimately lose all of his sight at some point in the coming few years.
He uses audio equipment to record lectures and help him to sit exams, and although there are some things Chris will never be able to do, Nick said his son remains positive about a future which could include University.
“Sometimes he has down days and gets frustrated, but he’s learning to compromise and we want to make sure nothing stops him achieving what he wants to achieve,” he said.
Lack of support for RP Fighting Blindness means despite offering 20 places, Nick will be one of just eight runners for the charity in the London marathon, and he will be the charity’s only representative at the Silverstone half marathon on March 11.
“I believe that with the right support, within 15 years someone like Chris will have their condition reversed, but it needs people to back it,” Nick said.
To support Nick, visit www.just giving.com/Nick-VaughanRP.