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Thanks to previous research funded by the Children’s Hospital Foundation, new therapies and treatments are available for kids like Evie.
Evie is only nine years old, but she’s had many tough times throughout her young life – and many nights spent in hospital. Sometimes fighting not just for air, but for life.
Because, at just four weeks old, Evie was diagnosed with cystic fibrosis.
Every day, the inherited genetic disorder makes it harder and harder for Evie to breathe. Because every day, mucus slowly clogs her lungs. This thick and sticky mucus causes damage not only to her little lungs, but her digestive tract and other organs too.
And, even with recent advances, Evie – and other children with cystic fibrosis – may only live to see their 30s or 40s.
In order to give Evie a fighting chance, her mum, Lee says her little girl has had “everything thrown at her”.
But despite all the therapies, treatments, and long hospital stays, Evie’s condition deteriorated.
“Once a year, we would go to the hospital and have what they would class as a tune up. And after she turned six, everything went downhill just in that one day.”
“On that day she ended up in the PICU. And from then on, she’s had IV’s, a port, a feeding line put, as well as multiple scans, blood tests and operations.”