Motor Neurone Disease is known as ‘the 1000-day disease’ because people rarely survive that long after diagnosis.
Neale Daniher is not in the league of physicist Stephen Hawking, who lived for 55 years with the incurable and fatal illness, but the FightMND advocate is at around 3000 days since his 2013 diagnosis.
Daniher, 60, on Sunday was appointed an Officer (AO) of the Order of Australia, for his charity work, adding to his 2016 AM.
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He dedicated the latest honour to his family - wife Jan, their four children and partners.
“You are there for me every day caring for me,” Daniher said of his family in a statement.
“I want to acknowledge it’s difficult to bear witness to a progressive terminal disease which is MND, but your presence by my side is so important to me,” the statement added.
“This presence, and especially the grandkids, Cooper and Rosie, remind me every day to focus on what I have in my life, not what I haven’t.”
Kevin Sheedy, who coached Daniher at Essendon in his AFL playing career, also singled out Jan.
“Everybody forgets her and we shouldn’t - she’s been an enormous support,” Sheedy told AAP.
“Think of the network around Neale, supporting him to achieve his dreams and make sure they can beat this beast of a disease for other people.”
Daniher, whose sense of humour remains razor-sharp, sees it differently.
“I was winning many arguments with my wife. I’m not winning anymore. I can’t talk,” he told FoxFooty last week.
As Daniher’s MND has progressed, daughter Bec has assumed a more prominent role in helping promote FightMND and appears with him at public events.
Bec revealed last week her dad is losing his ability to communicate.
“He’s going alright, you know he’s such a positive person, but ‘the beast’ is starting to take his voice and it’s really hard to watch that happen,” she told Sunrise.
“It’s hard for him to talk to us.”
Big freeze
Monday will be the seventh Big Freeze, the MCG promotion that is the centrepiece of fundraising for the FightMND charity.
Daniher is the face of FightMND, which he co-founded seven years ago after his diagnosis.
It is a behemoth, raising around $50 million for research into the fatal disease which Daniher calls ‘the beast’.
And as that beast steadily tightens its grip on him, the footy motto “play on” has become Daniher’s latest rallying cry.
Sheedy always knew Daniher would be a leader.
One of four brothers to famously play under Sheedy at Essendon, Daniher only managed 66 AFL games because of knee injuries.
But he was Sheedy’s first best and fairest winner when he took over as Essendon coach in 1981 and the year after, Daniher was made captain at just 21.
Daniher became known as ‘The Reverend’ during his reign as Melbourne coach, leading them to their most recent grand final in 2000.
“He’s never been out there, always the quiet man - like a padre,” Sheedy said.
“Perfectly named: The Reverend. Wouldn’t do a thing wrong in his life.
“He was just a walk-up start to be a leader and he’s never let anyone down - in the AFL, Melbourne ... and obviously the mighty Bombers.”
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