Felicity's Story

Meet little Felicity and her journey with CF in mum Nicole's words.

Learning Baby Felicity has Cystic Fibrosis

We recently spoke to mum Nicole about her family’s reaction to Felicity’s cystic fibrosis diagnosis. The initial phone call is etched in Nicole's and her husband's mind as Felicity had zero symptoms and the diagnosis came as a complete shock. What followed was a whirlwind of information and they say it felt like cystic fibrosis took over their lives in those early days.

Each day was a juggle getting all Felicity’s medications in and physio done around her sleep and reflux. Nicole says their newborn bubble was popped by frequent visits to PCH and numerous phone calls. She is thankful for the incredible team checking in on her and holding their hands as they navigated the ‘new normal’ of germs, stagnant water and antibiotics.

Nicole says in those early days they felt like they were holding their breath, waiting for Felicity to get sick. Despite Felicity’s older brother bringing home all sorts of bugs and germs, she was never sick in those first few months. Nicole is grateful as it gave Felicity’s lungs the best start, she says. They navigated many firsts including first clinic, first CT, first bronchoscopy. They said they knew if was all to protect Felicity, but it didn’t make it any easier to hand over care of their child. That’s where Cystic Fibrosis WA came into the picture to support the family.

Thanks to funds raised through campaigns such as 65 Roses Day the family were able to access resources such as books to help explain CF to Felicity’s older brother, check in phone calls and more recently a weekly CFWA Support Worker to provide respite at home. Nicole has also joined the CF Parents Connect online playgroup and parent support group for parents of pre-school aged children with CF. The program hopes to create connection, friendship, and a safe place to talk about all things parenting and beyond.

This program facilitated by Mel, a paediatric OT/child and family therapist, and social worker Vic, aims to provide a space that is positive, supportive, informative, and collaborative. Nicole says these sessions have become an incredible space for supportive women who know what we’re going through but also know how to laugh about it and lend a helpful ear or advice. She says they wouldn’t be where they are without the knowledge that they have if it wasn’t for CFWA’s support and resources.

Nicole reflects and says cystic fibrosis has become a normal part of their life now – just like their team at PCH said it would.

"Physio happens without discussion; our son no longer questions why we’re doing things. Felicity takes her medicine easily and without complaint. We avoid spaces that aren’t safe, take extra steps to make other places safer and have tried to just get on with life. We know we’re just at the beginning of our journey and so much can change in an instant, but our hope for Felicity is that she is able to live as much of a normal life as possible, just with a few extra steps each day."