Mitch McKinney runs for those who can’t.
He isn’t a professional runner.
In fact, by his own admission, he’s “not particularly” a runner at all.
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WATCH THE VIDEO ABOVE: Mitch runs a marathon a day for Angelman Syndrome awareness
But still he decided to run a marathon a day, totaling 1100km in 29 days across New South Wales to raise money for Angelman Syndrome — a rare neuro-genetic disorder affecting balance, movement, and speech.
From the red dust of Broken Hill to the sea breeze of Newcastle, Mitch’s legs are tired, but his heart is full.
It’s a feat fuelled not by medals or records, but by love, community, and the genuine desire to help children like Huxley.
The one-year-old boy was born to Jess and Bree Maguire with Angelman Syndrome.
Jess and Bree are raising a blended household with three children — Asha, 14, from a previous relationship, and their youngest two, Sage, 3, and Huxley, who were both born via IVF.
When it came to baby Huxley, Jess said they had “some concerns right from the start”.
Those concerns turned into heartbreak when doctors finally figured out what Huxley was dealing with: Angelman Syndrome.
“He was only diagnosed at four months old ... we haven’t been on this journey for very long, but we’ve learned a lot,” Jess said.
There is no cure for Angelman Syndrome yet.
“This all started because my son goes to a family day care run by Jess and Bree Maguire,” Mitch told www.20304050.best over the phone while running through Dunedoo, about 300km northwest of Newcastle.
He was determined to transform Huxley’s diagnosis into positive change and awareness.
‘Parents of kids with Angelman Syndrome run a marathon every day’
For Jess and Bree, Huxley’s diagnosis changed everything.
“You’re thrown into this new world that you never even knew existed,” Jess said.
“We had to grieve that life that we had planned for him, but we still have him, and he’s still a beautiful little boy.
“It was very isolating at first. We had to come to terms with the fact that Huxley would never speak, would likely never live independently.”
The diagnosis also came with a daunting reality: therapies, equipment, specialist care, and a life of navigating systems not built for rare conditions.
“Parents of kids with Angelman Syndrome run a marathon every day”, Jess told www.20304050.best.
“We have to create that neurological pathway in his brain.
“Instead of developing naturally, we have to create that for him.
“That’s why early intervention is key … we caught it so early, and that’s vital.
Home is where Huxley’s therapies happen: Jessica balances being a family day-care educator with delivering targeted occupational therapy, physio and speech programs for their son.
““Bree goes off to work and I stay at home with him and I educate and care for four children … it works very well for us because I can stay at home with him and I can still earn an income.,” Jess said.
“We want Huxley to have every opportunity to thrive.
“But that means we need help — research, funding, and awareness.”
Caring for “angel kids” is a physical, emotional, and mental marathon, Jess explained.
That’s where Mitch stepped in.
Mitch started in Broken Hill on August 22 with the goal to run a marathon a day from the bush to the beach for Huxley and every other child like him.
Of course, around 40km a day takes a toll on Mitch, causing sore muscles, injuries, blisters, sunburn, and tiredness.
“But I’ve got to keep it in perspective. Mine will be over. Mine was only ever gonna last the month. Theirs lasts a lifetime,” he said.
“We’ve got mums and dads and grandmas and grandpas … dealing with not only Angelman Syndrome but a whole lot of rare diseases.
“They don’t get a break. They’re up all through the night. They’re tired for sure.”
His daily routine during his 29 days of running is brutal in its simplicity: “Wake up, eat, hydrate, get dressed, jump out of the car and start rolling. One foot in front of the other. Very basic.”
But what’s followed him every step of the way surprised him.
“There’s been an enormous show of support,” Mitch said.
“People are honking horns, yelling out, handing money over on the side of the road, taking photos. I’m more than overwhelmed with the response.”
He ran through towns often overlooked in national conversations — like Dunedoo — bringing not just awareness but community pride.
“This run picks up a lot of little communities that often get missed when you’re talking about rare diseases,” he said.
“It’s affecting every demographic and geographic area.”
Changing lives one step at a time
The 38-year-old has now been running for weeks. Each day, a new child’s name is written on a board with each step dedicated for them.
One day it’s Huxley, the next it’s another child living with Angelman or another rare condition.
“I’ve been given a tremendous opportunity to be part of such an amazing community,” Mitch said.
“To see such character, resilience on a daily basis — in the faces of families and kids who are actually dealing with this.”
And though Mitch insists he is only has a “small part” of the campaign, Jess sees it differently.
“Mitch is a hero,” she said.
“He didn’t have to do any of this. He’s not related to us, he’s not directly affected, but he saw our struggle and decided to step up in a huge way.
“That kind of empathy is rare.”
Several celebrities, including Casey Barnes, Fatboy Slim, Lynne McGranger and Brisbane Lions’ players have publicly thrown their support behind Mitch’s marathon and the fight to raise awareness for Huxley.
The last 300km
Mitch doesn’t know what to expect when he reaches Newcastle.
“There’ll be some people, some not. Probably just … ,” he laughed.
He’s humble to a fault. But those who have followed his journey either online or on the roadside know the impact he’s already made.
As the final kilometres approach, Jess is filled with gratitude.
“This run means the world to us,” she said.
“Not just the money raised, but the awareness.
“People are googling Angelman Syndrome. They’re talking about it. They’re seeing our kids. And that’s how change starts.”
Jess said the one bright side of Angelman Syndrome is children like Huxley usually have a happy demeanor and smile often.
But he can quickly get frustrated when he struggles to move or can’t communicate what he wants.
How you can help
But the journey doesn’t end in Newcastle.
“Our kids still need therapies, support, and hope,” Jess said.
“We’re hopeful in the next five years, cures will be available, and treatments could come even sooner.
“Everything that’s coming will only help him more and more and more ... it’s going to improve his quality of life astronomically.”
While Mitch may stop running at the beach, the families keep running — every single day.
Huxley only started rolling and now “he rolls everywhere”. Each small win is a major win for Huxley and his family.
“He’s trying to crawl at the moment.
“Little things like that are huge milestones for us.”
While Huxley’s rare diagnosis has brought new challenges, it’s also united the family in ways they never expected.
"Thank you for choosing us to be your mummas 💙 you have changed our life in so many ways and made us better mums and better people. We will always hold, protect, and never stop until we find you a better future 🙏."
Mitch will reach Newcastle on September 19.
When asked how the run has changed him, Mitch didn’t hesitate: “For the better, that’s for sure.”
“I just can’t be more grateful if the focus stays on Huxley and all the kids. I’d be very grateful for that.”
The fundraiser Huxley’s Heroes has been launched bringing together community members, supporters, and advocates who are committed to raising awareness and funding for research and therapies.
Stream free on
