“Everyone is dying,” the mother of two said.

“And none of us knows when.

“It’s all about perspective."

MND is a progressive, terminal disease with no effective treatment or cure.

Anyone can get it, and it kills 50 per cent of sufferers within two years and 90 per cent within three.

Clare and Chris Vickery moved to Armidale from Sydney earlier this month with their children Alexis, 6, and Joshua, 4.

The move brings them closer to family in Tamworth and Chris said they really wanted to be somewhere with a slower pace of life and more space.

“In Sydney, all we could get was a little shoe-box,” he said.

“When you have MND, your home is your entire environment.

“So we really wanted to have a beautiful home and a great space for Clare to get involved and watch the kids.”

The degenerative effects of the disease are crippling Clare’s ability to engage in normal family life.

As her fine motor skill fail, daily tasks like changing a nappy or preparing a meal for her children are no longer possible.

Chris is Clare’s primary carer and also bears the bulk of responsibility for the children.

“He has transitioned to being the primary parent but also makes sure that i have what i need,” Clare said.

Nurses, specialists, cleaners, and relatives share the family’s challenges .

But labels on cupboards and draws tell the story that the family home is now public domain.

“We’re so appreciative of all the support,” Chris said.

“But we’ve also had to realise that this is our life now.

“This is it, and we just have to keep finding some time to sit out in the garden.”

Before the move, Chris showed his children the stars in Sydney and told them “In Armidale, there will be a thousand times more stars, literally a thousand times more.”

“So i took them out on the second night and they were absolutely gobsmacked,” he said.

“We all just stood out there in the freezing cold just staring at the stars.

“It’s taking the time to do things like that, which is so important.

“You can’t have a life that is just functional.”

In less than a year the family has endured both parents leaving their jobs, moving homes, the kids changing schools and dealing with the illness itself.

The financial implications are severe so Clare’s former work colleges have set up a crowd-funding page to assist with the family's ongoing medical costs.

“Without taking away from the seriousness of the situation, we’ve really tried to approach it in a positive way,” Clare said.

“It’s a delicate subject, but someone can get hit by a car on the way to work and they don’t get a chance to put anything in order or leaves memoirs for their kids or hug them a hundred-thousand times.

“We’ve got a really bad diagnosis but I have time to spend with my family, I have time to write a letter, and not everyone gets that.

“I don’t want to take away from it being shit because it’s really really shit.

“But no everyone gets time, and i get some.

“I might not live till I'm 80, i think the odds are low, but the time I have, I can choose how i spend it and not everyone gets that.”

To donate, visit www.mycause.com.au/page/130947/courage-for-clare or to make a donation to MND NSW go to www.mndnsw.asn.au

See Clare and Chris take on the Ice Bucket Challenge here to raise money for MND research.