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Former Wallabies hooker Nathan Charles, who is believed to be the only person with cystic fibrosis to play a contact sport professionally, has been diagnosed with motor neurone disease and is planning a foundation to help young people build resilience.
Former Wallabies hooker Nathan Charles has been diagnosed with motor neurone disease, adding a second cruel illness to a life already defined by a rare genetic condition.
Charles Faces Motor Neurone Disease
Charles, believed to be the only cystic fibrosis sufferer in the world to play a contact sport professionally, received the MND diagnosis on September 13. Charles said his voice breaks momentarily before he steadies himself and returns to a lifelong routine of sizing up adversity.
I find it strange - I won't use the word funny - but it's ironic I was born with a life-threatening illness, and gave that a red-hot crack, and now this other thing comes along, he said. Something else is striking me down, rather than what I've been dealing with my whole life. It has been extremely challenging and overwhelming, and at times quite cruel, Charles said. But I've got a lot of great people around me.
It is what it is, and you've got to get on with it, so that's what I'm trying to do. After being diagnosed with cystic fibrosis - a genetic disorder that causes thick mucus to build up in the lungs and digestive system - Charles' parents were told he may not survive past his 10th birthday. But after a regimen of blowing up balloons as a toddler, medication and playing lots of sport, Charles thrived and became a talented footballer.
Wallabies Career and Cystic Fibrosis Advocacy
He was chased by the Bulldogs but chose rugby, and after working his way through the ranks with Sydney Uni and the Western Force, Charles played for the Wallabies in four Tests in 2014. He started at hooker for Australia against the All Blacks in 2014 in front of 68,000 people at Accor Stadium. After a 10-year career, Charles retired in 2018 and later worked as chief executive of Rugby WA and helped run Sydney Uni rugby.
He is also a tireless ambassador for cystic fibrosis charities. In December last year, Charles started feeling a bit off at the gym, but medical checks showed nothing. It was probably when I went to the neurologist for the first time in March and, naturally, you type in your symptoms and the first thing that comes up is MND, Charles said.
At that point, I didn't believe it was that, but in July, when things were getting worse, I definitely had a bad feeling in my gut. His first thoughts after the diagnosis were concern for his fiancée, Steph Bailey, parents David and Heike, and his brother Matthew, sister-in-law Andy and niece Oakley. Because I felt as though this would impact them greater than it would me, he said.
MND Impact on Charles and Family
I had a bad feeling going into that appointment and my fears were realised. It was the people around me that I felt worst for. My first question was, How long have I got? I really only know what you see and hear about MND, Charles said.
I know that every person with MND has a different journey and path, and it affects everyone differently. I know there's no cure, and your physicality and body deteriorate, cutting your life short. I am already greatly impacted by it. I get around with mobility aids and struggle with many daily tasks.
Putting on shoes and socks is a challenge. According to MND Australia, the average life expectancy after diagnosis is two to three years. Scientists don't know the exact cause of MND. As far as I know, there is no connection with CF, it's just absolute rotten luck, Charles said.
Rugby Legacy and Future Plans
To be fair, if I'm a person of firsts, I'm taking it to the extreme. Given the spate of footballers who have been diagnosed with, or died from, MND, the role of concussion in the condition is also being scrutinised. Charles says he agrees with Moody, who said in a recent interview he'd live the same life over, regardless. Even if it did contribute, would I change what I've done? he asked.
Probably not, because rugby has given me a great life. I've been able to do things that less than 1 per cent of the population have the opportunity to do. A GoFundMe has been created to help Charles and his family with the costs of future care and mobility challenges, and there are also plans to launch the Nathan Charles Foundation.
We want to create something that supports and empowers young people around resilience, while helping people access opportunities they may have thought were out of reach, he said. The news is still raw, but Charles is focused on moving past the shock and grief and living a full life. I woke up one morning, a couple of days afterwards, and thought, This is a bad dream, Charles said. But after that, I realised I can't keep thinking like this.
My initial mindset was, I'm now doing things for the last time. Instead, I really want to flip the script and say, I want to start doing things for the first time. The fights against CF and MND are different, Charles says, but the mindset is the same. You're going to have your challenging days, and understanding that allows you to reset and say, Righto mate, today is today, what are you going to with it?
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brisbanetimes:He beat cystic fibrosis and became a Wallaby. Now Nathan Charles is fighting another cruel diseaseThis story was compiled and edited by the HeadTopics newsroom and HT AI from the reports above.
Motor Neurone Disease Cystic Fibrosis Wallabies Nathan Charles Foundation
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