Sydney dad to run 80km to raise funds for Duchenne Muscular Dystrophy research

Five-year-old George Stalley isn’t able to run around like little boy’s his age due to a genetic disease – but his parents’ best friend is set to undertake an incredible task, running 80km for his little mate.

When George Stalley was just 18-months-old, his mum and dad Kathy and Glenn were given news no parent wants to hear, told to “make a lot of memories and give him a beautiful life”.

Little George, the Stalley’s first child, was diagnosed with Duchenne Muscular Dystrophy, a genetic disorder characterised by the progressive loss of muscle which affects boys.

The news came with a devastating prognosis: a boy with Duchenne can expect to be in a wheelchair by 12 and has a life expectancy of 30.

“It was horrible,” Mrs Stalley said. “I had never heard of it, and to be told there is no cure, it was really hard.”

George Stalley has Duchenne Muscular Dystrophy. Picture: Tim Hunter

At five-years-old, George is a quirky little boy who loves the Titanic and anything spooky, but has started to notice he is different from other children, with his parents preparing him for his first wheelchair.

“He is asking more questions, wanting to keep up with his mates, boys his age want to run around and he can’t,” Mrs Stalley said.

“It’s an invisible disability, and not a lot of people know about it.

“We are framing the wheelchair as being like a bike, something special just for George.”

Inspired by George and his fighting spirit, Mr and Mrs Stalley’s best mate Cameron Nicholls is undertaking an extraordinary task, an 80km ultra-marathon to raise awareness and funds for Duchenne Australia.

A father of four, Mr Nicholls has been waking up at 3am most days to train for the run, thinking about George every time he wants to hit snooze on his alarm.

Cameron Nicholls is running 80km to raise money for Duchenne Australia, after little George (pictured) was diagnosed with Duchenne Muscular Dystrophy at 18-months-old. Picture: Tim Hunter

“There’s no excuses, I’ve got every part of me that is very capable of getting up and doing it,” Mr Nicholls said.

“George has got no choice, in a matter of five years he will be wheelchair bound.

“Getting a nice couple of hours extra sleep is nothing compared to what George and the Stalley’s do every day.”

Mrs Stalley said when Mr Nicholls approached her family with the idea of dedicating the run to George they were “blown away”.

Kathy and Glenn Stalley with their five-year-old son George, and best mate Cameron Nicholls. Picture: Tim Hunter

“George’s diagnosis came with a massive grief process, and we weren’t able to look beyond that for a long time,” she said.

“We are so proud to be his friend and grateful for the acknowledgment of Duchenne.”

Mr Nicholls and the Stalley’s hope to raise $25,000 for Duchenne Australia, which drives research that could one day end this devastating disease and create a brighter future for kids like George.

Come October 26, there’ll be just one thought on Mr Nicholl’s mind as he gets into position on the starting line: “it’s all about making a difference for George and other little kids like him”.

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