Wade is 11 and has cystic fibrosis. His family have to pay $21,000 a month for miracle drug, Trikafta.

When babies when they're born, they are required to get a heel prick test to check for a number of various genetic diseases. When Rachelle took her son Wade to get his, she didn't expect too much from it.

Then six weeks later, she received a call saying there was a chance Wade had cystic fibrosis. And after further testing, the diagnosis was confirmed. 

"There was a lot of grief [when we first found out]," Rachelle tells Mamamia. 

"There was grief that he would be taken away before he got to fulfil his purpose. There was a selfish grief as well for our family, knowing we would have to make a lot of sacrifices. It was overwhelming."

For Rachelle, who is a paramedic, she had some background knowledge on what cystic fibrosis (CF) is. But it was nothing compared to the lived experience her family has now.

Watch: Daisy's cystic fibrosis treatment. Post continues below.

In Australia, one in 2,500 babies are born with the condition, and there is currently no cure. CF primarily affects the lungs and digestive system because of a malfunction in the exocrine system that's responsible for producing saliva, sweat, tears and mucus.

For Wade, this is what he experiences on a day-to-day basis. In January this year, his lung function was at just 51 per cent and he took a turn for the worst. His enzymes also don't work, meaning he is unable to break down his own food well enough. 

Plus, Wade has dealt with multiple lung infections, because the mucus in his lungs traps the bacteria. The infection he currently has is really bad – so much so that Rachelle said it could be something he has for the rest of his life. 

"We saw the enormous drop in his health, and it was terrifying. He has been fighting this bug for 18 months now. He's had 24 weeks as an inpatient in hospital and been on a big cocktail of intravenous antibiotics. It was hard to watch his health decline," Rachelle says.

So on January 18, Rachelle and her partner made the call to buy a month's worth of Trikafta for Wade. And it cost them around $21,000 – and will continue to for each month's worth of medicine. Because currently in Australia, Trikafta is only available on the Pharmaceutical Benefits Scheme (PBS) for Australians over the age of 12.

For anyone under 12, the drug has been approved as safe to use by the Pharmaceutical Benefits Advisory Committee (PBAC), but is yet to be put under the PBS so that patients can be subsidised.

"I'm in a very privileged position where I've been able to come up with the money to buy it. We think my parents will pay for the next one. After that we don't know," Rachelle says.

"But we will sell something or redraw down on a loan. That will take us through to April, which is when it's reportedly scheduled to go through the government and parliament for kids 11 and under to have access to it on the PBS. The other option is that Wade turns 12 in August, and paying for each month until then would be difficult."

It highlights the financial burden placed on families who have a child with CF. And also the emotional toll if they can't afford the medicine.  

For lots of families with children who have CF, they are unable to work – spending their days having to look after the child. That can mean managing five nebulisers a day, organising the medications drawer, doing the physio, the weekly blood tests, ECG scans and hospital visits.

Wade during his treatment in hospital, and some of his daily medications. Image: Supplied.

Already after using Trikafta for just under a month – consisting of three tablets per day – Wade's lung function is up to 67 per cent, his oxygen saturation levels are normal and his heart rate has dramatically improved. He also has more energy to breathe and is hopefully going to start putting on some weight, as he is currently underweight. 

But Wade still continues to fight the current lung infection. And for Rachelle, it's frustrating to know that if he had access to Trikafta before he caught the bug, he likely wouldn't have caught it or would have had a far better chance at fighting it.

"I just wish no kids ever catch this horrible bug that he's got, because the medical staff don't know if Wade will be able to get rid of it, ever. Someone without CF wouldn't catch it, but for kids with lots of mucus in their lungs, it traps the infection. Right now, it's a shame that a kid under 12 could catch an infection like this. If they had been on Trikafta prior, it could be life-saving."

For Rachelle, she says her family are starting to feel more hopeful about the future. Rachelle and her partner also have an older daughter, who doesn't have CF, but they are determining if she is a carrier or not for the CF gene. 

Genevieve Handley is an adult with CF who is now on Trikafta, and has seen her quality of life significantly improve. As a Yes To Trikafta advocate, she wants everyone who needs the medication to have access.

"There are more than 500 children aged between six and 11 desperately waiting for access to Trikafta," she said to Mamamia. 

"More than 20 other countries have prioritised the health of the young ones with CF by making Trikafta available and we need Australia to catch up. Trikafta is a life-saving medication that decreases lung damage and time in hospital, adding years, if not decades to life expectancy."

In a statement to Mamamia, a spokesperson for the Minister for Health and Aged Care Mark Butler said in November the Pharmaceutical Benefits Advisory Committee recommended that Trikafta be added to the PBS for treatment of children with CF aged six to eleven. 

"The Albanese Government will work with the sponsor, Vertex, to move as quickly as possible to make Trikafta available for this age group. A PBS listing would mean that eligible children in this age group would be able to access Trikafta at a subsidised cost. Trikafta saves lives."

For Rachelle, she's concerned that the conditions placed upon those being able to access the PBS Trikafta medication will mean some kids will miss out.

Wade, his mum Rachelle, and their family. Image: Supplied.

"I just wish the ministers and the government would make the call now. I really wish that all kids could have access now to minimise the chance of being in a situation like Wade is now, with a bacteria that is there for life, further hindering his CF."

But what Rachelle is happy to see is conversations surrounding CF and Trikafta enter the mainstream. And recently, a lot of it has to do with Married At First Sight contestant Lyndall Grace.

Her storyline on the show has focused a lot on her experience of having CF and accessing the life-saving Trikafta treatment for a reasonable price on the PBS.

As Lyndall said on the show: "This new drug makes the lung cells work like they’re supposed to. It's meant to add decades to the lifespan. Before this drug existed, I had resigned myself to the fact that I was never going to get married. Now I potentially have another 40 years."

And any positive coverage towards the Yes To Trikafta cause is a step in the right direction for the CF community. 

"It's just a big roller coaster," Rachelle says.

"I can't even think of our life a month ago when we didn't have access to Trikafta, and watching him deteriorate. It was probably one of the worst experiences ever. It felt like this was our last chance. So there's no way we will stop – no matter what, we will pay for it."

Feature Image: Supplied.