Broken Hill’s Mitch McKenny, a passionate advocate athlete, is on an amazing adventure. His goal is to raise awareness and funds for Angelman syndrome, a rare genetic condition that affects brain development and often causes severe physical and intellectual disability. He may have the most ambitious plan. He wants to run the distance equivalent to 27 marathons over 29 days, starting on the first birthday of their son Huxley Maguire, born to Bewley’s best friends Jess and Bree Maguire.
The run will officially start on Friday, with McKenny intending to run the full 1200km from Broken Hill to Newcastle. This massive undertaking zooms in on two primary objectives. It’s intended not only to raise money, but to help raise awareness of Angelman syndrome, an often undiagnosed or misdiagnosed condition due to its rarity.
The Journey Begins
Huxley Maguire was diagnosed with Angelman syndrome at four months old. Earlier this year, Jess and Bree Maguire were given heartbreaking news. They were very excited for the arrival of their little baby boy. It must have been heart-wrenching to receive the diagnosis the week before Christmas — the season normally filled with so much happiness.
“They told us to come in, we thought it was cerebral palsy. She [the paediatrician] cried when she told us [it was Angelman syndrome],” – Jess Maguire
The couple recalls the confusion and grief that followed the diagnosis, feeling lost as they grappled with what it meant for their son and their family. “In the midst of everything, we were lost, we were grieving this little boy we thought we were going to have,” Jess continued.
Moved by Huxley’s story and the roadblocks that Huxley’s family had to navigate, McKenny knew she needed to step up. He’s put in the hard work, training the last six months for this historic run. Along the way, he’ll take breaks in major towns such as Dubbo.
Raising Awareness and Funds
The campaign has taken incredible steps already, cumulatively raising more than $100,000 for FAST (Foundation for Angelman Syndrome Therapeutics). Further fundraising is certainly McKenny’s primary focus, but she adds that raising awareness about Angelman syndrome is a close second.
“I hope by the end of it all everyone knows what Angelman syndrome is, so it’s not something that gets missed in diagnosis and in treatment,” – Mitch McKenny
He hopes the increased focus on the disease will have lasting effects on people living with it.
“Funds are very important for a number of practical reasons, but the attention and the noise around Angelman syndrome is going to be far more beneficial long-term,” – Mitch McKenny
Yet for all the magnitude of his undertaking, McKenny is intentionally modest about what he very much hopes will be his legacy mission. He understands the teamwork commitment that’s required and understands his role is just one piece of a bigger puzzle.
“I know there are a lot of people behind the scenes doing the hard work, I’m literally just putting one foot in front of another,” – Mitch McKenny
The Road Ahead
McKenny’s run highlights not only his physical endurance but the resilience of families like the Maguires who face daily challenges associated with Angelman syndrome. He proceeds on this quest with a rabid intensity. Even more important than that are the hopes and dreams of all those directly affected by his journey resting squarely on his shoulders.
With each move, he hopes to cultivate awareness and empathy for kids like him who suffer from this condition. He is aware that the odds against him are formidable but does not lose attention.
“I know what my job is. It’s pretty simple.” – Mitch McKenny
McKenny is looking forward to an amazing adventure in front of her. His tireless commitment to spreading awareness and raising funds motivates those around him. From the whole community, he has the energy and inspiration to carry him not only through his extreme challenge, but through the important cause that he runs for.
