Broken Hill man Mitch McKenny passed through Cobar on Monday on his 1,100km run from Broken Hill to Newcastle to raise awareness and funds for Angelman syndrome (AS).
Angelman syndrome is a rare, lifelong genetic condition that affects the nervous system, causing severe intellectual disability, delayed development, limited speech, and problems with movement and balance.
Mitch decided to do the run after his friends’ Jessie and Breeze’s child Huxley was diagnosed with the condition last year.
“My young fellow goes to their daycare, and he really enjoys that environment.
“He’s flourished there,” Mitch told The Cobar Weekly.
“They are part of that family fabric he’s developed so when you see them being absolutely devastated by little Huxley’s diagnosis, it’s sort of hard to watch your kid receive so much love and attention from them with their young fella needing some help.
“So we put our heads together and this is what we came up with.
“We knew it had to be big,” Mitch said of his fundraising effort.
“And we knew we had to be symbolic of the marathon that people dealing with Angelman syndrome are experiencing every single day without respite and for all of their life.
“It just seemed like it was a fitting test of endurance and also an opportunity to raise a lot of awareness.”
It’s a huge undertaking with Mitch having already run 10 marathons (42km per day or there abouts) before he reached Cobar and he still has 16 more marathon runs ahead of him before he reaches Newcastle.
Mich said while he has run marathons in the past (about 15 years ago), he wouldn’t consider himself a runner now, but has been training over the past six months.
“I started to first walk and then run, and then gradually increasing the K’s and the mileage each week and, then in the blink of an eye, six months had gone past.”
Mitch said the run is probably more mentally taxing than it is physically challenging.
“Yes you’re dealing with different injuries, but there’s so many different things that you never anticipate, how like the camber of the road can affect ankles and all different things, and obviously navigating around traffic and that kind of stuff.
“It’s just a baptism of fire, trying to get your head around all that, plus work out how to keep yourself fuelled and hydrated and rested.”
Mitch has a great support crew with his dad and aunt and uncle travelling in safety escort vehicles with him while Jessie is at home doing all the organising for Mitch’s trip and helping to promote the fundraiser,
In addition to the help Mitch, Jessie and Breeze have had from their families, they’ve also been supported by friends, local businesses, people Mitch has met along the way, strangers who have waved, beeped encouragement and others who have stopped to donate.
Mitch’s goal is to make it to Newcastle and to raise over $150,000 for the Foundation for Angelman Syndrome Therapeutics Australia (FAST) to help Huxley and others diagnosed with Angelman syndrome.
