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How cutting-edge treatment and vital research is tide turning for kids with cystic fibrosis

A shock diagnosis

When Lee took her happy and seemingly healthy baby girl to a routine health screening, she had no idea the impact this day would have on their family. Following the heal prick test, four-week-old Evie was diagnosed with cystic fibrosis. Overwhelmed and heartbroken, Lee and her family had to come to terms with the long and difficult journey Evie would now face.

Thriving through the tough times

Evie’s condition has caused ongoing infections in her lungs, which has resulted in severe lung damage. Her treatment includes daily physiotherapy, nebulisers, medications and nutritional support to aid her growth, and she has undergone multiple procedures and operations. Each hospital stay usually lasts around two weeks, with short stints at home in-between to recoup and mentally prepare for the next admission.

Spending so much time in hospital away from family and friends is extremely difficult for the whole family. While Evie is in hospital, she is supported by the Children’s Hospital Foundation –spending time in Kidzone and receiving music therapy to help ease the anxiety during treatment and procedures. Despite everything Evie faces daily, she keeps smiling and remains determined to live her best life.

Research is key for a future with hope

Evie will possibly require a double lung transplant in the future – with her medical team working tirelessly to prolong time before this procedure with admissions and treatment. In early 2021, her family received news that Evie had access to Trikafta – a revolutionary drug used to treat cystic fibrosis – which has been instrumental in her wellbeing and quality of life.

For the very first time, there are now more adults than children living with cystic fibrosis across the world, with increased survival rates thanks to ground-breaking research. With the generosity of our supporters and donors, the Children’s Hospital Foundation has pledged $2.5 million over five years towards Queensland’s first dedicated cystic fibrosis research program, supporting leading researchers including Professors Claire Wainwright, Peter Sly, and Scott Bell. The research strives to deliver improved health outcomes, better quality of life and longer life expectancy for kids, just like Evie.