As any parent will tell you, there's nothing that compares with their child's little eyes burning through you, fear written all over their face.

The child might often scream, 'help me, help me' and all you want to do is bawl like a baby, but you can't. You tell yourself, you've got to be strong and you tell them, 'everything will be OK'.

Normally, you get some relief as the child is stretchered into the operating theatre and you can sob uncontrollaby, either by yourself or with family.

But Steve didn't have that 'out'.

This was no normal operation. This was stem cell therapy. And he was right in the theatre.

"I went and bought a watch with a camera in it," he said.

"I just wanted to get my head around what was happening, so I had some footage."

It was a surreal experience, but that was just the start.

When Steve and his wife Kath decided to undergo the risky surgery, it was 'under the table'.

"Every time we spoke to the neurologists about stem cell, they said there was no scientific evidence that it works," Steve said.

So the pair decided to act.

"You've got to do what you've got to for your kids," Steve said.

Helen Spittal heard of the pair's plight and organised a bumper fundraiser.

So Steve and Kath were driving from Wodonga to Melbourne with $40,000 in the car. And they felt like criminals.

"What happens if we get caught (by police), what are we going to tell them," he said.

And there were no contracts at the other end, nothing signed.

Sure, there are no guarantees with surgery, but at least you get a receipt.

Life wasn't supposed to be like this.

WHAT'S UP WITH JOSH?

Josh was functioning normally until the age of five.

Then life stated to rapidly change.

"We'd be out kicking the ball and he'd just fall over or he'd be batting at cricket and he'd fall over and this got progressively worse," Steve said.

"When it hits the kids, it attacks them really quick."

It turned out Josh had an undiagnosed form of ataxia. He has a shrunken cerebellum which affects the motor skills. It is hereditary.

Steve's aunty, older sister and three other family members have it. 

"Still, to this day, mate we (Kath and I) look at each other and go, 'what did we do wrong'?" he said.

His nephew is in a wheechair.

Neurologists told the family to do the same.

"But we told them we had high hopes for Josh and we will allow him to do what he wants to do," a defiant Kath said.

"We were determined to let him live his life as normally as possible."

So mum started researching.

"Mate, we were trying anything, we went to a spiritual healer in Wodonga and I wore a cap because I was worried about somebody seeing me," Steve said.

"We watched a bloke go up in a wheelchair and, no word of a lie, he got up and walked out.

"We were the only people that day that the way we walked in, was the way we walked out." 

They told friends and family they were going to Fiji on holiday in 2015.

"We actually went and saw a spiritual healer," he said.

"We went to this remote part of where some of the kids have never seen a white person before.

"I'm not joking mate, when we turned up in the car there were 50 kids and all they wanted to do was play with our kids."

But one moment stands out.

When the family was involved in that fundraiser in 2011, a gentleman got in contact.

He had this 'liquid gold', which would help.

Steve set up a meeting and the man told him only he could apply the substance, and he could do it only when Josh was in a bath with just those two present.

Steve asked him to leave and never speak to his family again.

LOOK AT JOSH GO

The family was told it wouldn't see any changes in Josh for at least six months.

"Then people would come up and say, 'gee, what's going on with the young fella, he looks great'," Steve said proudly.

"He's walking better, his balance is better, he's talking better."

The neurologists couldn't believe what had happened, asking the pair as it to say, 'no seriously, what really happened'?

Josh attended St Anne's in North Albury and his parents will never forget the support.

The family was uncertain though whether to keep him in mainstream secondary schooling

It opted for Belvoir Special School in Wodonga and, like so many youngsters, Josh struggled at first with high school.

"It was two weeks and you would just walk out of there and bawl your eyes out because he was so upset, he didn't want to be there," Steve said.

But Josh stuck at it and now loves the place. The feeling is mutual.

"He's one of the most resilient kids we've ever come across," principal Jamie Gay said.

"We were playing footy last year and Josh went for the ball and three kids just ran into each other, everyone knocked over, Josh was the first one to get up and get the ball."

The fiercely independent 13-year-old is even catching the bus by himself.

"There's been times when I've been sitting in a parent-teacher interview and the teacher will say, 'Josh is doing so well', and you just burst into tears," Steve said.

But like his dad, sport is Josh's great passion.

He plays for New City under 14s in cricket.

"I took five wickets," he says proudly. And he's also made four runs.

"That's like 400 runs," Steve said.

The sight of Josh striving to be the best he can has rubbed off on team-mates.

"Josh is the most determined, tough kid I've met in my life," coach Rod Paul said.

"He's really honest with himself as well. He came out after batting one day and I said, 'gee, Josh, you were batting alright' and he said, 'I batted like sh--."

His parents say treating Josh the same as their other children, Adam (19) and Will (8), has been the key to his development.

"My eldest sister (Leanne) has been disabled since she was nine and I've just got the best out of her," Steve said.

"If we're walking down the street and I see someone looking at her, I'll go, 'don't mind her, she's had a few drinks'," he laughs.

A sense of humour, and the extended family's love, has been pivotal.

"It's important to not stop because it may seem like a lost cause," Kath said.

"We will continue to support Josh until the time comes when he says stop but, hopefully, that is a long time away."