The news that brought Chloe's parents to their knees

When Tara and Sean Cameron welcomed their first child, daughter Chloe, they didn't know what to expect from parenthood.

All they knew was they loved their little girl to the moon and back, and would do absolutely anything for her.

It was the results of the newborn "heel-prick test", also known as the blood-spot screening test, that first showed something was seriously wrong with their daughter.

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"That's where they picked up the genes," Tara, 39, tells 9honey.

"We found out two and a half weeks later that she carried both of the two CF (cystic fibrosis) genes. My husband and I are both carriers of the CF gene."

With both parents as carriers, Tara and Sean's children have a 25 per cent chance of being born with the life-limiting condition.

During those two and a half weeks, Tara had noticed Chloe was struggling with what appeared to be "really bad reflux, and she was pooping everything out" – digestive issues that are common with CF.

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Tara was told it was "normal" for some newborns to vomit and poop excessively.

"It was obviously very uncomfortable because she wasn't sleeping. Her tummy was obviously hurting a lot."

When they were told their daughter had CF, they were asked what they knew of the disease.

Tara and Sean knew it was a lung condition, but they had no idea it also impacts the digestive and reproductive systems, and can cause diabetes and multiple other comorbidities.

Tara had known one person, a friend, who had CF and later died in their early 30s.

At the time, this was the average age of life expectancy for someone with the condition, although that has significantly improved thanks to new treatments and is now in the 50s to the early 60s.

"I was 33 years old when we had Chloe, and it was gut-wrenching to hear that she may only live to the same age that I was at the time," Tara says, recalling it as a "really, really, really hard time" in their lives.

"We fell to our knees. We were absolutely devastated."

Since her diagnosis, Chloe has spent a large portion of her life in the hospital being monitored and receiving treatments as well as undergoing surgeries, with Tara by her side.

Sean works away for two-week periods, racing back to his family in between stints.

Chloe's first surgery was at six months of age, when she underwent an invasive procedure called a bronchoalveolar lavage (BAL), and then another surgical procedure at 18 months.

She is now four and has had to give up her beloved dance classes for now, although she does normally attend preschool – but not at the moment.

Winter is a challenging time for those with chronic diseases, and Chloe has been sick with a cold for the past six weeks. It is looking like she will need to be admitted for treatment, as is often the case when she fails to recover from them.

Chloe is on a medication called Creon, which treats the exocrine pancreatic insufficiency that comes with CF.

"The reason why she has Creon with all her food is because she's pancreatic insufficient," Tara explains, adding that her daughter takes a total of 30 medications each day.

"We do physio every day with her at home, and all of this is just a minimum when she's well.

"When she's unwell, we do physio twice a day or maybe even three times a day, but we go to the hospital at least every three months for a review.

"We talk about how she's going, any test results that we've received recently, and she gets her weight and height checked every three months.

"She's constantly monitored by a large team. We've got a respiratory doctor behind us, nurses, a physiotherapist, a dietitian, and a social worker."

Chloe is also now on a medication called Trikafta, a so-called miracle drug for CF sufferers, which has now been added to the PBS, making it affordable for CF families.

"She has it twice a day, and for her age group it's in a granule and we've minced it up with milk and it's supposed to basically level out the salt chloride levels in her body, which helps thin the mucous.

"Also, it's been showing signs of helping with her pancreas."

The first time Tara heard of Supertee was on Facebook approximately two years ago.

Supertee provides medical garments for sick children, designed to allow for procedures to be conducted and, most importantly, to give the children undergoing these procedures much-needed support and joy.

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They come in a range of fun designs, including Marvel and ballerinas. Today, Chloe is the proud owner of three Supertee garments.

"We do imaginary play in hospital, so she steps out of the fact that she's having medical procedures, and she can be playful while she's there," Tara explains.

"With her Marvel Supertee, she can run around. One of them had a cape on the back of it ... she would run around with her arms out, as if she were a superhero.

"It's a good distraction from what she's really there for, not only for her, but for us parents as well, because it's a talking point as well.

"So people will be like, 'Look at you, you little superhero' or now it will be, 'Oh, you beautiful ballerina.'"

The charity recently organised for Chloe to meet a real-life ballerina, Jade Wood, in Melbourne. She also became the first child in Australia to be given the new ballerina Supertee.

"She was so excited, and when she met her, she was just in awe of her, a real ballerina. And she loved seeing her dress and dancing next to her."

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