The CF Together Podcast

Newly Diagnosed: What I Know 4 Years on | Mandy – Mother of 4-year-old Rory, diagnosed with cystic fibrosis at birth
In this heartfelt episode, host Lyndall Grace speaks with Mandy — early childhood educator, CF Together team member, and mum to four-year-old Rory, who lives with cystic fibrosis (CF). Mandy shares the emotional experience of Rory’s diagnosis through newborn screening, describing how she felt deeply overwhelmed then she and her partner focused on working together as a team, drawing on the strength of their family unit to find creative, consistent ways to care for Rory.
Mandy reflects on how her early childhood background has shaped her parenting—transforming daily cystic fibrosis care into moments of connection, play, and learning. From turning physio into a game to using visual schedules and social stories, Mandy has adapted familiar tools to support Rory’s development and sense of agency.
She also talks about the importance of whole-family wellbeing and how advocacy starts at home—with routines that work for everyone, shared responsibilities, and open communication. Her story is a beautiful reminder that with love, teamwork, and creativity, families can find strength and joy even in the face of complex health challenges.
This episode is filled with warmth, insight, and practical tips for families navigating life with cystic fibrosis.