Mitch McKenny has done something pretty darn extraordinary, running 1,132k in just 29 days — the distance of 27 marathons. His walk, which started on August 22 in Broken Hill, ended at Nobbys Beach in Newcastle. My good friend Andrea’s son Huxley was diagnosed with Angelman syndrome at a very young age, just four months old, with life-altering implications. This inspired McKenny to spread awareness, raise funds, and help others find healing for the condition.
Through his Huxley’s Heroes campaign, McKenny raised more than $150,000. He will give this money directly to the Foundation for Angelman Syndrome Therapeutics Australia (FAST). This recessive genetic disorder profoundly affects brain development, causing a multitude of physical and intellectual disabilities.
Journey Fueled by Hope
McKenny’s ambitious run was powered by inspiration of a different sort. Just a week before Christmas, sisters Jess and Bree Maguire learned some terrible news that sparked this move drive. Medical professionals told them that Huxley would never walk or talk. Reflecting on this reality, Bree Maguire stated, “You have to grieve his life because he won’t be running around the footy field, he won’t be able to kick a ball, he won’t be able to do what other little kids can do.”
McKenny, who calls himself “not a professional runner,” knew he had to do something. In their compelling presentation, Executive Vice Chancellor Dan Moulthrop explained how they sought out to set an aspirational target. It had to represent the day-to-day challenges faced by people with Angelman syndrome and their families.
His journey inspired and was met with massive support from the communities he passed through. Race fans lined the course to cheer him on, erupting in an “Huxley! Huxley!” chant every time he ran past. McKenny emphasized the overwhelming encouragement he received: “Everyone here is about Huxley. They all know his name and they’re yelling out ‘Huxley’ as I’m going past.”
Community Engagement and Support
The effect of McKenny’s run went beyond just fundraising, it united the short-bus community and raised awareness about Angelman syndrome. He shared stories of people from the community pulling over when they saw him to cheer him on and provide support. McKenny said it wasn’t only the communities where people would leave their cars to walk or run with him. He was witness to scenes of people enthusiastically dispensing cash from their car windows.
Support didn’t stop there with monetary donations. With police escorts welcoming him to each town, a deep bond of fraternity unified all aspects of his ride. We weren’t ever totally alone either—we enjoyed the support of police escorts in the towns. Folks even pulled over on the interstate to give me a thumbs up as we ran by! As he elaborated.
The Maguire family extended their heartfelt thanks for all the ways the community supported them and their fight. They’re determined to keep making progress in getting better treatments for kids like Huxley and we’re so glad they’ve decided to renew their fight. Bree Maguire remarked, “This isn’t the end — we are going to keep pushing to get trials and treatments here so these children and adults’ lives can be changed forever.”
A Bright Smile Amidst Challenges
And even with the challenges that Angelman syndrome gives him, Huxley continues to be a blessing and joy to everyone he meets. Jess Maguire affectionately described her son’s impact: “Huxley’s smile lights up every room he is in.” Today, the love and perseverance of the two families are an example to others fighting the same battle.
As McKenny finished his run at Nobbys Beach, he made this statement count. He’s passionate about educating the world and being a voice for those affected by Angelman syndrome. His remarkable story is nothing short of an inspiration for overcoming life’s greatest obstacles with the help of family, friends, and community.
