The dad and uncle of a Derbyshire boy with a rare muscle-wasting condition are pushing themselves to the limit to help him and other sufferers.
Eight-year-old George Tolley, of Kirk Langley, was diagnosed with Duchenne muscular dystrophy just before his fourth birthday.
The incurable life-limiting condition affects his ability to stand and will eventually affect his heart and respiratory system.
His family have launched George's Giants to raise money for Muscular Dystrophy UK's vital research and to provide for George's future care needs.
His dad Ashley, 39. is part of a four-man team taking part in Pedal Paddle Peak in the Lake District on July 3, while his uncle Dr Matt Straw will be running the Boston Marathon in Lincolnshire on Bank Holiday Monday, May 31.
Ashley said: "The diagnosis was heart-breaking, especially as we had no suspicion that anything was wrong with George. There is no family history of this condition. George’s condition is as a result of a genetic mutation.
"George is currently able to walk short distances, with the use of orthotics, but spends much of his time in a wheelchair. Eventually George will become completely wheelchair bound, which is likely to be in the next few years.
"As the condition develops, George may need assistance with breathing.
"George is the most amazing chap you could ever meet. He has taken everything in his stride and has such a positive outlook on life, which we actively encourage.
"We are always finding ways for George to be involved in activities and want to give him the best and most enjoyable life possible."
The Pedal Paddle Peak challenge, organised by MDUK in the Lake District, is a 30-mile bike ride, two-mile canoe paddle and Helvellyn mountain climb.
Ashley, who is managing director of a civil engineering company, said: “I’m really looking forward to the challenge and to pushing myself to my limits."
He will be doing the event with three of his closest friends, who he's known for nearly 30 years, including George's godfather Dan Furness.
The Boston Marathon is a first for Matt.
The 47-year-old, of Allestree, said: “The impact of George’s diagnosis on him, his parents and the wider family cannot be imagined.
"But they have taken George’s diagnosis with great grace and strength and his family want to ensure we look for the positives in filling George’s life with love, fun and activity.
"I am honoured to be one of George’s Giants and to help raise money for MDUK. I have never run a marathon before, but before the event starts, the fundraising process has been really enjoyable, and incredibly rewarding.
"The support from people who have kindly donated has been amazing and surprisingly emotional for me.
Ashley can be supported here and Matt here
"The generosity of people is astounding.
"Knowing that I am able to raise money that will go a little way to help George and others suffering with muscular dystrophy will keep me going on the day.
"Based on my training, I reckon I will enjoy the first ten miles, though the next 16 will be a different matter,” added Matt, who runs an engineering consultancy.
Duchenne is one of many forms of muscular dystrophy and it mainly affects boys. The prognosis is that most sufferers will only live into their early adult years.
Susanne Driffield, MDUK regional development manager, said: “I’m in awe of the tough challenges Ashley and Matt are taking on for George’s Giants and I am really enjoying supporting them with their fundraising.”
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