Naomi Fryers opens up about her upcoming marathon journey, which she hopes will bring the world closer to a cure for her brother in law, Marcus and for all those people who battle the rare and ravaging neurodegenerative disease known as Friedreich’s Ataxia (F.A.)
I am fortunate and blessed to be surrounded by good – and indeed great – men in my life. But few stand out with the understated rock-star status of my brother-in-law, Marcus.
It’s his journey, his perseverance, his guts, his strength of character and his plight that has motivated and challenged me to embark on my own personal and physical challenge.
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It’s his journey, his perseverance, his guts, his strength of character and his plight that has motivated and challenged me to embark on my own personal and physical challenge.
I am going to lend my muscle and run 21.1kms around Melbourne by way of a half-marathon, while fundraising for Friedreich Ataxia Research Association (Australasia). I’m doing this in the hope that researchers will move a step closer to finding a cure or treatment for F.A so that Marcus and others who suffer from this condition can have options and enjoy the longevity and relative health that most of us take for granted.
Marcus struggles with motor skills and coordination, but never through lack of trying. And every day he pushes and tests his own physical limits and capabilities to “make things happen.” He approaches life with good humour (and a mobility aid) as well as a solid positive attitude.
To be fair, I’m not exactly an elite athlete myself. I’m a rookie, a novice and back-of-the-pack runner. I’m certainly one of the more unlikely candidates for completing a half marathon. I shuffle intervals slowly and my humble beginnings as a runner started with a loose affiliation to a group for overweight and beginner runners. But I’m training… hard, and have been for some months under the guidance of a coach, several apps, a physiotherapist and the bloody big cheer squad I have collected along the way. And I’ve come a long way from where I started.
It’s a big feat to get your head around when you used to struggle to walk to the end of the street, weighed over 100 kilograms and have been known to throw in the towel before when stuff got too hard in life.
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I’m working on my physical and mental strength in preparation for my half-marathon. It’s a big feat to get your head around when you used to struggle to walk to the end of the street, weighed over 100 kilograms and have been known to throw in the towel before when stuff got too hard in life. Last weekend I had the privilege of being coached by an elite runner named Eryn who has completed ultra marathons including 50km trail runs.
I told Eryn why I wanted to complete the mission I had set myself. She said, “You’d be surprised just how far emotion and sheer determination can carry you.” I truly believe that, too, and I think on the day of the big race, this factor alone will see me over the line. And it’s Marcus who has ignited that determination through the way he approaches everyday life with F.A.
Marcus was actually my friend before he was my sister’s boyfriend and then husband. I like to remind her of that. They got together at a young age so he has been a part of our family for many years. I knew he was a stayer from the first date they had, though… I third-wheeled in his old green commodore with Shania Twain blaring from the speakers the night we criticized Mum’s cooking. And from that moment, I felt pretty much like ‘welcome home, bro.’ A bit of a larrikin, and certainly a lad, some of the most memorable things I have learned from him include the fact that leotards as dancing dress ups, alcohol, and men in their early twenties are not a winning combination. But there have been other far more valuable and sobering lessons too, particularly recently as Marcus began to suffer from the rare neuro-degenerative disease that impacts his body daily.
More recently Marcus has taught me by example that it’s ok to struggle… There’s no shame in it whatsoever, as long as you never quit.
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More recently Marcus has taught me by example that it’s ok to struggle… There’s no shame in it whatsoever, as long as you never quit. Marcus is stoic and carries on with life despite his daily struggles all while working and raising my two adorable nieces. Did I even mention Marcus being an amazing husband to my sister who for years has worked as a nurse (inclusive of the dreaded night duty and all the sleep deprivation that comes along for the ride!)? We all have our challenges in life, some are just greater than others. I’ve had a fair few of my own.
At the end of the day this run isn’t about me. This cause is far bigger than me. It’s not even my life and quality of life that depends on this research and funding. It’s the lives of countless others who live with F.A. With that in mind, like Marcus, I won’t be quitting. I won’t quit training in the cold and dark after work and at ridiculous o’clock in the morning. I won’t quit being grateful for the support I have received so far. And I won’t quit asking for more help including from donors and corporate sponsors because we desperately need additional support to give FARA a head start with the aid of future research. Because at the end of the day, lives like Marcus’ literally depend on it.
If you’d like to help me on my mission, help Marcus on his way and of course help to find a cure or treatment for Friedreich’s Ataxia, please make a donation direct to FARA via the link below:
https://donate.grassrootz.com/…/…/naomi-fryers-half-marathon
Photo by the author