00:00Mitch McKenney has been training for months to run from the desert to the coast.
00:08His inspiration? A baby boy named Huxley.
00:13The son of family friends, he's been diagnosed with the rare neurogenetic condition Angelman syndrome.
00:20It was a difficult process that took several months.
00:23When we had the news, Marg called us into the office and gave us the news of Angelman,
00:28our world just got flipped. He's never going to walk, he's never going to talk, he's never going to do this.
00:35It was pretty devastating.
00:39Mitch knew he couldn't sit still and started Googling.
00:43I ended up calling the Foundation for Angelman Syndrome Therapeutics here in Australia,
00:47expecting to speak to the first line operator, ended up speaking to the CEO Megan Cross
00:52and that's pretty much where the story started.
00:55He's now running from Broken Hill to Newcastle, 42 kilometres at a time.
01:00That's 27 marathons over 29 days, keeping to spare for bad weather or injury.
01:06The proceeds from Mitch's epic charity run will go towards the Foundation's research efforts.
01:11It's working with scientists to investigate treatment options that could reduce the severity of symptoms.
01:18I hope by the end of it all, everyone knows what Angelman syndrome is,
01:22so it's not one of those things that sort of gets missed in diagnosis and missed in treatments.
01:27Day one of the run coincides with Huxley's first birthday.
01:31His parents are focused on the future.
01:33I think to focus on him a little bit and see what we can get for him,
01:37but who knows for Hux, we never say never then.
01:41One step at a time.
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