When Chiara was born, first-time parents Daniella and Charlie thought that the sleepless nights, excessive fussiness and constant tummy upsets experienced by their baby were normal for a newborn.
It wasn’t until they received a call from the Murdoch Children’s Research Institute when Chiara was five weeks old, to let them know of an abnormal result following the heel prick test undertaken at birth, that there was an inkling that something more might be behind her unsettledness.
A range of tests at the RCH followed, and then when Chiara was just six weeks old, the unexpected diagnosis of cystic fibrosis (CF) turned Daniella and Charlie’s world upside down.
CF is a condition that primarily affects the lungs and digestive system, due to a malfunction in the exocrine system that’s responsible for producing saliva, sweat, tears and mucus. There is currently no cure, but advances in treatment and care are helping people better manage their CF.
“It was a strange time waiting for the test results; it was both a blessing and a curse, as after we received the diagnosis and Chiara was put on enzymes to help her body absorb food, everything changed. She was sleeping through the night, thriving, putting on weight and happy,” Daniella said.
“But hearing the news that we would potentially outlive our child was heartbreaking, and not something I ever wanted to hear.”
Since Chiara’s diagnosis, she has been under the care of Professor John Massie and the respiratory team at the RCH, and has had to attend the hospital regularly for check-ups and testing.
“We are so grateful for our team of doctors, nurses, dieticians, physiotherapists – everyone who is involved in Chiara’s care means the world to us. We have had a very positive experience since diagnosis and feel so supported,” Daniella said.
A few years ago, after being told that salt air can be beneficial for CF patients, the family relocated from Melbourne to St Leonards, a small coastal town near Geelong.
Telehealth appointments and the Hospital-in-the-Home program have meant Chiara and her family only need to travel into the RCH twice a year. Thanks to the support of the RCH Foundation, patients like Chiara were supplied with the equipment necessary to undertake lung function and a range of other tests from home.
“Telehealth appointments have been fantastic, during COVID-19 in particular we were grateful that Chiara was still being checked and she could still be tested. The RCH sent us a lung function machine and now we can do all those tests from home,” Daniella said.
Chiara celebrated her ninth birthday last month and is able to live her life normally, thanks to the expert care of the RCH. She adores school and loves music and dancing, her friends and family – and the Carlton Football Club.
So, it was a real thrill for Chiara and her family to be involved in the Good Friday Appeal SuperClash this year.
“Chiara got to go into the locker room after the game and was on Patrick Cripps’ shoulders, and we all got a little star struck. I can’t explain it, it was just an amazing day, we were so grateful to the RCH for organising it all. When we got in the car at the end of the day we were over the moon, it took a moment to process it all.
“If you looked at Chiara now amongst other nine year olds you would never know she has CF. Thanks to the RCH, she’s grown into a beautiful, happy-go-lucky, active girl,” Daniella added.