Julian Thompson will remember forever remember the day his son, James, was diagnosed with Duchenne muscular dystrophy at just two years-old.
Duchenne is a life-limiting, muscle-wasting disease that leaves kids struggling to walk before they reach their teenage years. It affects approximately one in 3,500 male births worldwide, and there is currently no cure. Since his son's diagnosis, Julian has spent every ounce of his energy in improving his son's quality of life, and every other person born with the disease.
As humans, we make meaning out of tragedy, that's what we should do because the only other option is to quit, and quitting gets nothing done.
Julian has raised nearly $4 million dollars through the charity Fight Duchenne, which he set up after James' diagnosis.
He has raised enormous funds for towards research for a cure, and more recently to improve the immediate quality of life for sufferers of Duchenne. The funds have been raised predominantly through the charity cycle ride known as The Tour Duchenne, which first took riders from Sydney to Melbourne in 2009.
In 2018, the family was struck another devastating blow when Sharyn Thompson, James' mother, was diagnosed with pancreatic cancer.
Julian was not shy that the family has faced mental health struggles, but their resilience and determination to keep going has prevailed.
"We all go through mental health troubles and dark places where you feel the world's against you, and you're beaten down. But you've got to get up and make try and make a difference, because you only get a short amount of time on the planet, and that's what we're gonna do," he said.
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In the family's savoured opportunities to travel and holiday, they consistently were being placed in hotel rooms that were not disability friendly, even after being assured they would be accommodated.
"These people are as much a part of the community as anybody else, and for too many decades they have been excluded in doing what the able-bodied community are allowed to do, and that simply isn't fair," Julian said.
It's this gap in the market that led James and his father to fundraise for the building of a fully serviced respite home in Bombira Estate, Mudgee, in NSW's Central West, that will allow short term accommodation respite breaks.
The Tour Duchenne 2021 will see over 25 riders make their way from Sydney to Mudgee over five days, all on an off-road track that James will tackle in his electric wheelchair. He has been training in his off-road wheelchair that will take him over 300 kilometres in October, but he isn't nervous.
"I have no nerves at all, I'm excited about it because it's a new experience and I'm doing it in an interesting way," James said.
James and Julian hope to raise $100,000 dollars as a team, it's a huge undertaking but together they're both confident they can go the distance.
"As humans, we make meaning out of tragedy, that's what we should do because the only other option is to quit, and quitting gets nothing done," Julian said.
To donate or get in touch, head to tour-duchenne-2021.raisely.com