Premiership Cat Mathew Stokes recounts his father’s battle with Motor Neurone Disease

Former Cats star Mathew Stokes still remembers the call when he found out his father John had been diagnosed with MND. Now he’s fulfilling one of his late father’s wishes by telling his story.

Two-time Geelong premiership star Mathew Stokes, with his father John, who died from motor neurone disease (MND) last year. Pictures: Supplied

John Stokes grew up in Tasmania, played football all around Australia before settling in the Northern Territory.

He was one of those journeyman country footballers who was good enough to travel far and wide to ply his trade, making a mark in every town he came across on his football odyssey.

Last year teammates of Stokes from every point of the nation converged on Darwin to celebrate their mate who was in the midst of losing a battle he knew he couldn’t win.

Stokes was diagnosed with MND (Motor Neurone Disease) in February last year – he died in September three days after Father’s Day – and one of the priorities he told his son, Geelong premiership star Mathew, was he wanted to have a party with his mates.

Determined to go out on his own terms, there ended up not just being one big bash, there were three parties where lots of tales were told with John’s reputation as a footballer growing by the hour.

Two-time Geelong premiership star Mathew Stokes, with his father John, who died from motor neurone disease (MND) last year. Pictures: Supplied

“At the end he was wheelchair bound and couldn’t move but he didn’t want to shy away from it,” Mathew explains.

“He wanted people to see and remember him for who he really was, the happy talkative story-telling man that he was. Dad never shied away from seeing people, especially by the end of it he just wanted to tell one more story.

“We had three going away parties, one of them was his birthday, and he didn’t want to leave any of them. He felt like everytime he said goodbye to someone he was closer to the end.

“He cherished moments to the end with a lot of his teammates, people he grew up with and played a lot of footy with and against.

“I heard more stories in the last six months with his mates and him than I had my whole life.”

John’s nickname was ‘Stavros’ and you instantly knew where people had come across him by whether they called him ‘Stokesy or Stav’.

“When he got his first job in Darwin he was working with the Greeks as a roofer and concreter,” Mathew says. “They thought Stokesy wasn’t Greek enough so across the Territory he is known as Stavros.

“I loved calling him Stavros, it was a funny nickname.”

So what sort of footballer was he?

“I have heard him describe himself as Leigh Matthews in the VFL days, he could play either midfield or forward and kicked a lot of goals,” Mathew says.

“From all the stories I’ve heard he was a bloody good player. From his stories he was Lethal and also Junior and Senior (Ablett) combined.”

Even at 70 years of age John was still active, exercising every day, sometimes running up to 10km while also having a weights set-up at the back of his apartment.

Stokes, with his father John. Pictures: Supplied

Then out of the blue he started to regularly lose his balance, often tripping over his own feet.

The family was worried because doctors kept telling them John had a minor stroke and “not to be too alarmed”. But they were as this went on for months.

“I still remember the phone call like it was yesterday to get the news that he’d been diagnosed with MND,” Mathew recalls. “It was a smash in the face to hear that and immediately my thoughts went to Neale (Daniher) and that this is something which is incurable, that was pretty hard to take.”

There wasn’t a lot of expertise in the Northern Territory around MND with Mathew and his sister Amy, who lives in Darwin, shocked when they started to try and get help for their father.

“In the Territory there were only four other people who had MND, there wasn’t a lot of information on it and we were just given a pamphlet and a Facebook page to follow.”

Mathew knew AFL executive Andrew Dillon was on the Fight MND board which had been set up by Essendon legend and former Melbourne coach Neale Daniher who’d been diagnosed with the disease called ‘The Beast’, in 2013 and was now dedicated to raising funds for research.

“I called Andrew Dillon as soon as it happened and he then gave me a number for Bec Daniher and Jan, Neale’s wife. I was in constant contact with them probably over a six-month period on the expectation and what was going to happen.

“They were a support network to be able to talk to, both of them were amazing for me and my family. The reality is not everyone is able to get through like Neale and have the years he’s had.

“No matter what you get told and who is around you, you’re still alone. That is the reality of something that doesn’t have a cure, there were days where it just felt like it was me, my sister and my Dad.

“While everyone’s support was incredible, the reality is you are in the fight yourself, as brutal as that sounds, it’s just the reality of the situation.”

Bec and Neale Daniher. (Photo by Dylan Burns/AFL Photos via Getty Images)

Amy was forced to take long service leave while Mathew made regular trips up and down from Geelong to Darwin as the family rallied around John whose mind was sharp but his body began failing quickly.

“He went from a pretty fit man who could run 10 to 15km in a day to pretty much needing full-time care,” Mathew said.

“My sister and I pretty much did everything for him, the last six months were pretty horrible and we were able to find a nurse to help us out.

“He lost everything in his legs and then all sorts of strength in his neck and his arms became non-existent. The brain was there, his sight was there and he was speaking to the end.

“That was probably the hard thing as a male looking at your father, your hero, the guy that you looked up to, I just looked at him as a bloke who couldn’t be hurt so to then see the pain in his eyes, he knew what was going on but he couldn’t do anything about it.

“He kept wanting to fight, that was one of things that made my Dad my Dad. He didn’t know any other way and that was to just keep fighting.”

Stokes is telling his family’s story as part of this year’s FightMND campaign. Picture: Brad Fleet

The family researched the ‘Beast” and found out there were trials in the US happening which were potentially coming to Australia but it was going to be too late. Trying to understand why their Dad had been targeted was a “rabbit hole” they decided not to go down.

“We had people left and right telling him different reasons, some brought up concussion from his football days which is really dangerous,” Mathew said. “My sister and I made a conscious decision not to try and delve into it too much.”

Mathew admits he is still struggling to come to terms with what happened to his father but is fulfilling one of his last wishes by telling his family’s story as part of this year’s FightMND campaign.

“I remember sitting on the back of his porch and I was like, ‘Dad what do you want from me in this?’” he recalls.

“He just pulled me straight in front of his face because he obviously couldn’t turn his neck and said: ‘If the Danihers ask you to do anything, you say yes’.

“Dad knew he wasn’t going to win the fight but eventually we are going to win the war and hopefully we can honour Dad’s memory and the person and legacy of who he was by being a part of that.”

Originally published as Premiership Cat Mathew Stokes recounts his father’s battle with Motor Neurone Disease