Cystic fibrosis is a genetic disease that causes persistent infections of the lung, and there is currently no cure for the one in every 2500 children born with it in Australia every year.

On Sunday, the Minister for Health and Aged Care announced that the ground-breaking drug Trikafta, which previously cost families more than $250,000 per year, will be available on the PBS for $42.50 a script.

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After years of advocacy to make Trikafta more accessible, 2,500 families are set to benefit from what Junee's Deanne Crowder described as "the closest thing we have to a cure."

"When you have a child that's diagnosed with something like this, it literally turns your world upside down," she said.

"Trikafta is the closest thing we have right now to fixing what goes on inside their bodies ... if families in the future are offered this, it's going to make a big, big difference."

Mrs Crowder's two-year-old son Hunter was diagnosed with cystic fibrosis a few weeks after his birth, which placed his life expectancy no higher than 35 years.

The news was a shocking blow to the family who were initially unaware of what cystic fibrosis was - but a quick Google search described it as an "incurable, terminal illness".

"I literally went into a full-blown panic attack," Mrs Crowder said.

"My doctor had to give me a sedative to calm me down, that's how freaked out I ended up getting."

The family was referred to a specialist in Sydney to confirm the diagnosis and his test results returned a 100 per cent, positive result.

Mrs Crowder described her son as "skin and bones" and recalled him crying continuously as his body struggled to absorb the nutrients from his food.

"Every single time I'd looked at him I'd cry because I just didn't know what to do, I just thought he was gonna die really young," she said.

"Then our doctor told us about Trikafta, and that kind of gave us a little bit of hope."

The Crowder family have advocated fiercely since hearing of Trikafta to have to drug added to the PBS.

Although Hunter will for now not benefit directly from the drug until the age of 12, the family is hopeful that further trials will go far to lower the age of access before then.

In the meanwhile, the drug's accessibility means that once available to Hunter, his life expectancy will drastically improve.

"Not only will his quality of life be better, but he actually has a chance of getting a gray hair," Mrs Crowder said.

"That's the main thing for us - we didn't want his life to be cut short, we didn't want him to only get half-life, and we didn't want him to have to live what time he has got in hospital."

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