Sam Burgess opens up about his dad’s battle with MND

The fight against motor neurone disease is personal for retired rugby league star Sam Burgess - he says he was “naive” as he watched his dad die from the illness.

After losing his own dad to motor neurone disease when he was a teenager, this is one fight Sam Burgess will never give up on.

And the former NRL enforcer is calling on everyone to put aside their sporting allegiances and get behind the historic Queen’s Birthday AFL clash between Collingwood and Melbourne at the SCG on Monday.

Due to the Covid-19 situation in Victoria, the annual Big Freeze clash to help raise awareness for AFL great Neale Daniher’s FightMND has been moved interstate for the first time.

Former South Sydney player Sam Burgess’s father passed away with MND and he is getting behind the Fight MND charity this year. Picture: Nathan Edwards

“This is bigger than a turf war between NRL and AFL,” Burgess said.

“This is hopefully about funding a cure to fight MND.

“Sport rivalry becomes irrelevant when it is a terminal disease we are trying to fight, and together we can fight and make a change.

“While it is obviously a sad situation having to move the game from the MCG, it is also a great opportunity for FightMND to grow and spread its wings.”

Burgess has formed a close friendship with the Daniher family after the former Melbourne coach was diagnosed with the disease in 2013.

The other connection linking Sam and his three brothers, Luke, Tom and George, to the Danihers was that the Danihers, who hail from the NSW central west town of Ungarie, were the only set of four brothers to all play a VFL/AFL match for Essendon together in 1990.

The Burgesses emulated that feat for South Sydney in the NRL in 2013.

Burgess vividly remembers trying to care for his own dad, Mark, when he was a teenager growing up in the north of England.

A young Sam Burgess with his father Mark

Like his sons, Mark was a powerful, tough forward who played for Nottingham City, Rochdale Hornets, Dewsbury and Hunslet.

He said at the time there was “zero” profile about the “terrible and tragic disease” that causes degeneration of the cells and nerves in the brain and spinal cord that control the body’s muscles.

“To be honest I was very naive to the fact Dad was going to die,” Burgess said. “My dad was my hero. But when he told me and my older brother (Luke) that he was sick, we didn’t understand it.

“We didn’t know what the disease was and we didn’t quite understand the severity of it.”

The twins, Tom and George, were about 12 when their dad started to struggle to speak, with Tom previously talking about Sam’s role in helping the family through the ordeal.

“Sam stayed with Dad until the end, carrying him up the stairs to bed when he became too frail to walk up himself,” Tom told the Athletes Voice.

“That is a lot for a teenager to go through. Sam shouldered much of the load and protected us from the worst stuff, all the while building towards his senior debut with Bradford.”

Burgess in action for Souths during his playing days.

Sam said he didn’t give up hope of finding a cure.

“As a kid I thought we could do anything,” Burgess said. “And I thought we would find a cure and we would beat motor neurone disease.

“But sadly that was 2007 when Dad died and there is still no cure.”

Mark died when he was just 45, surviving long enough to see Sam make his debut for Bradford but being unable to see him play for England in October 2007.

As the years have passed, Burgess has watched on helplessly as more and more friends and families have gone through the same horrible ordeal.

One of them was fellow England rugby league international Rob Burrow, who was diagnosed with MND in 2019.

Before the Covid-19 international shutdown, Burgess was planning to take part in an epic 800km road cycle challenge from Niagara Falls to Manhattan to also raise money and awareness.

English rugby league player Rob Burrow has also been diagnosed with MND. Picture: Getty Images

“Most people have problems and things going on in their lives,” he said.

“But once motor neurone disease has been anywhere around your family, you can’t help but not ignore this.

“And, sadly, a lot more people are becoming connected through this terrible disease but the awareness of it is still not where it should be in my opinion.

“The disease doesn’t discriminate and it is a really, really, terrible and tragic disease. But together we can all fight it and help make change.

“The sport is secondary. I know there is this turf war between the NRL and AFL. But if we can lend any help to hopefully finding a cure, who cares about sport.”

Daniher played 82 games with Essendon and coached Melbourne in 223 games.

Eight years on from his diagnosis, Daniher now lives his life by a simple mantra: “Play on.”

AFL legend Neale Daniher is fighting MND. Picture: David Caird

“I’m hard to understand, I have to shout. But you find a way,” Daniher told Fox Footy’s AFL 360 this week.

“I was winning many arguments with my wife (in the past). I’m not winning anymore. I can’t talk.”

Daniher said his mind was still “razor sharp”, adding while his battle was “physical, it’s more mental”.

While the match will be at the SCG, the popular ice bath slide is staying at the MCG on Monday. Melbourne Storm coach Craig Bellamy will be among 10 Aussie identities to make their way down the slide and plunge into an ice bath during one of the coldest times of the year in Melbourne. The charity has set a goal to raise $2 million by half time in the Queen’s Birthday clash.