When Evie was only four weeks old, she was diagnosed with cystic fibrosis (CF) – a life-threatening disorder that damages the lungs and digestive system.
Her CF has led to ongoing infections in her lungs, which has resulted in severe lung damage and hampered Evie’s ability to maintain a normal developmental weight for her age group. She is expected to require a double lung transplant in the future. However, her team are working tirelessly to prolong 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 CF – which has been instrumental in her wellbeing.
To receive treatment at Queensland Children’s Hospital, she often spends four to six weeks admitted as an inpatient. This means time away from her family, friends, and animals at her home in Chinchilla. These admissions are broken up with short stints at home to recoup and mentally prepare for the next admission. This is hard on Evie, her parents, and her siblings.
The Children’s Hospital Foundation has pledged $2.5 million over five years towards Queensland’s first dedicated cystic fibrosis research program to help improve outcomes for children living with the life-limiting condition, just like Evie.
Thanks to Children’s Hospital Foundation donors, we’ve proudly been funding leading CF researchers including Professors Claire Wainwright, Peter Sly, and Scott Bell’s research into the disease over the past decade. Children like Evie will benefit from the findings and advances that are discovered through the funding of this research program.
A baby is born with CF in Australia every four days, with around 265 children being treated for the condition at Queensland Children’s Hospital annually. Research strives to deliver improved health outcomes, better quality of life, and longer life expectancy for all of these children, just like Evie.
For the very first time, there are now more adults than children living with CF across the world, due to increased survival thanks to ground-breaking research. However, there is still much to be discovered as there is still no cure.