Then came the news that rocked the Checkley’s world – Macie has cystic fibrosis. Christie and husband Mick chose to channel their energy into raising awareness for a condition they otherwise knew nothing about.

“The first thing you see is the life expectancy and you freak out,” Christie said. “Everyone deals with it differently. For me personally, this is not something we can escape from. The scariest thing for me is I don’t want to outlive her, so if I can do anything to help create change for the better I will.”

Life expectancy for someone with CF born today is 37 but has been steadily improving with treatment advances.

CF is recessive genetic condition without cure. Macie’s mucus is sticker than someone without CF. This stops the pancreas from releasing enzymes into her stomach that break down her food. It also causes bugs that most of our bodies would just fight off, to get stuck in her lungs, causing irreversible damage.

The main cause of death in people with CF is lung failure.

Three-month-old Macie’s daily routine requires 30 minutes of physiotherapy (percussion to her chest and side) twice a day, antibiotics, vitamins, reflux medication and enzymes. Her skin tastes a little salty if you kiss her (people with CF lose a lot of salt), and so a salt mix is added to her bottles.

It has been a roller coaster for the family, including two-year-old Slater.

“We were relaxed parents with Slater but now we’ve had to change our parenting,” Christie said. “We don’t want to wrap her up forever but finding that middle ground has been a bit of a struggle.”

The Checkley’s are calling on support for running event Great Strides in Bendigo on October 23 to support the work of Cystic Fibrosis Victoria. To help: https://gs2016bendigo.everydayhero.com/au/breathe-for-macie.

For more details on CF, visit cysticfibrosis.org.au/vic