Flynn Mitchell said it was "a huge shock" when he was told he had Friedreich’s ataxia (FA).
But rather than be bogged down by the diagnosis, the 22-year-old University of Otago student has been using every bodily asset he still has, to "get s ... done".
"I think one of the most important things that one of my doctors has ever told me - which was harsh at the time, but so valuable in my life - was that I was never going to be able to make a living doing physical activities.
"He said it was my brain that was going to make a living for me. That’s what drove me to go to university.
"And so ever since then, I’ve been working hard to get s... done. I want to prove to people that although I have FA, I can still achieve."
And now, Mr Mitchell is about to graduate from the University of Otago today, with a bachelor of entrepreneurship.
Mr Mitchell said he got the diagnosis when he was about 15 - right in the middle of secondary school, when he was still very active with running and playing football and tennis.
A doctor made the diagnosis after he competed in the Auckland Children’s Ironman Race.
"Usually I would expect myself to come in the top 10 places, but I came second to last.
"I was just so exhausted and that just wasn’t like me at all, because my reputation was that I was good at these events.
"My mum realised something just wasn’t right with me and she took me to the doctors.
"It actually took me a couple of years to really wrap my head around it, because I was still so young and I didn’t understand the ramifications."
He said his condition had been steadily progressing over the past five years, and he was now in a wheelchair.
"Things have gotten worse, but I have great support from friends and family, who don’t let me dwell on that too much."
He said it was initially difficult getting to and from university lectures and friends’ flats in his manual wheelchair, but he consciously made the shift to a manual wheelchair to keep his strength and fitness up.
"My motto is, if you don’t use it, you’ll lose it. I’m trying to keep my muscles as active as I can, for as long as I can."
Although, he admitted cheating sometimes when he got tired.
He would attach an electric motor to his wheelchair to help him get up steeper hills.
He goes to the gym five times a week and goes swimming once a week as well.
This month, about 50 of Mr Mitchell’s friends at the University of Otago and across New Zealand have come together to participate in the nationwide Lend Us Some Muscle 2025 campaign.
They are completing daily physical challenges like running, walking, golfing and yoga - activities that he and others living with FA can no longer do - to raise funds and awareness for FA research.
The campaign has raised more than $15,100 and the goal is to raise $25,000.
Mr Mitchell is now studying for a master’s in business, innovation and entrepreneurship at Otago - skills he plans to use in the outdoors.
"My love in life is the natural world.
"I’m a very active outdoor person and I like to go fishing or camping or whatever.
"So, I would like to use my skills in entrepreneurship to sustainably help the natural world, by mixing conservation and business together.
"That’s my dream."
