Chloe’s story

Chloe leaps in the air with the grace of a dancer and the strength of an athlete – masking the fact the 13-year-old lives with a condition that has no cure.

Chloe leaps in the air with the grace of a dancer and the strength of an athlete – masking the fact the 13-year-old lives with a condition that has no cure.

Chloe was diagnosed with cystic fibrosis as a baby, but has never let that stop her.

Now in her first year of high school, Chloe loves ballet, jazz, tap, contemporary and hip-hop dancing as well as acrobatics, singing and musical theatre. Off the stage and on the field, Chloe stretches herself across Aussie rules, touch football, football, Oz Tag, basketball, netball, volleyball and rugby as a way to keep her lungs healthy and clear.

For her mum Connie, it is amazing to see Chloe now after watching her “healthy and chubby” baby turn into a “snuffly” baby in and out of doctor appointments trying to work out what was wrong.

“When Chloe was three months old, the paediatrician referred her to Professor Anne Chang at the Royal Children’s Hospital, as there was some thought that Chloe’s issues could be respiratory,” Connie said.

“Professor Chang ran some tests and diagnosed Chloe with tracheomalacia – a very soft and not properly formed windpipe. Chloe’s windpipe was the shape of an ‘S’, which explained her snuffling and restlessness when she lay on her side to feed.”

At about five months old, Chloe had immunisations and within two days lost 500g – a lot of weight for a baby. “Chloe was referred to a dietician. Dr Chang ordered a blood test for Chloe.”

That blood test revealed Chloe’s sodium and potassium levels were dangerously low. At 7pm that evening, Connie received a phone call telling her to take Chloe to hospital straight away.

Once at the hospital, doctors did the tests again.

“The emergency doctor didn’t think Chloe could be so sick but still smiling and happy."

The second tests confirmed the original – but there was a long journey ahead to find out what was causing Chloe to be so sick.

“Chloe was admitted, and tests were carried out on her liver and kidneys,” Connie said.

“The slow process of bringing her counts up began. She had a week or needles, bloods and other tests, to the point that she would start screaming when she heard the sound of the medical trolley approaching.

“The hardest part was not knowing.”

After further testing and a positive sweat test, Chloe was diagnosed with cystic fibrosis (pancreatic sufficient).

“My heart just dropped when I heard this,” Connie recalled.

“I didn’t really know what it meant then, but I did know that it couldn’t be good.”

Usually, cystic fibrosis patients carry two genes – one from the mother and one from the father.

“At the time she was diagnosed, Chloe was believed to be the only cystic fibrosis patient in Australia who had three genes,” Connie said.

“Because that combination of genes is not common, we really didn’t, and don’t, know how it will develop and progress.”

Despite the healthy and active lifestyle Chloe lives, the lifelong condition of cystic fibrosis takes its toll. For a long period of time, Chloe had daily physiotherapy, antibiotics, nebulized medications and extra salt. In 2010, she was admitted to hospital twice for lung infections, and at that time diagnosed with asthma.

Chloe’s family are careful to avoid potential situations that would jeopardise her health, especially in winter, where it’s more likely for her to catch viruses.

Chloe now comes in for check-ups every three months. Her daily routines of physiotherapy, medications and treatments continue. She also requires annual checks of bloods, lung functions and chest x-rays unless needed more frequently.

Chloe is one of 19 ambassadors for the Woolworths Regional Wall Tokens campaign.

By purchasing a $2 wall token from now until the end of September, you are helping fund equipment and programs in your local hospital, which help families like Chloe’s through an emotional, stressful, and at times uncertain journey.

Woolworths Regional Wall Tokens is an opportunity to highlight some of the brave kids throughout Queensland and northern New South Wales, who you can help by purchasing a wall token.

Other ways you can help

Everything we do for sick and injured kids is made possible by the generosity and support of our donors, partners and the community.