Koah- Starting School with CF
When Koah was getting ready to start school, his mum Brittany, was excited for him, but also nervous about how his CF would be managed once he was in someone else’s care. Would they recognise his needs when, on the outside, he looked like any other energetic five-year-old?
Brittany shares Koah’s journey to starting school, the worries she had along the way, and how support from CFWA’s Schools Program helped make the transition a little easier.
When Koah started Kindy in 2025, I honestly had no idea where to start when it came to sorting out CF at school. How do I tell the teacher? How do I make sure they take CF seriously when Koah looks perfectly well? How will we manage his medications? I was beyond overwhelmed.
Then I came across CFWA’s Schools Program and felt such a sense of relief. The team reached out after I submitted an enquiry and, from the moment we finished our first phone call, I felt as if the weight of the world had been lifted off my shoulders.
All I had to do was provide Koah’s school and class details and the CFWA team helped take care of the rest. They organised a time with the school to educate staff about CF. They walked around the school and identified potential CF-related considerations and provided practical resources and information for staff.
They also gave us information we could share with Koah’s classmates and their families, helping them understand CF and how they could positively contribute to Koah’s health. The resources were super cute and didn’t feel invasive at all. They simply highlighted what families needed to know.
The best part about the Schools Program was that I could set and forget. It was one less thing on my already long to-do list to worry about.
Knowing the school was prepared made all the difference
As a mum of a child with CF, I know I can’t control every aspect of keeping my son in the best health possible. Sending him to school meant trusting other people with some of that responsibility. Having CFWA provide education to the school helped ease so much of that anxiety. Knowing that proper, formal education had been provided before Koah started made all the difference.
I also really valued that the team reached out afterwards with feedback and reassurance that Koah would be in safe hands when it came to his CF.
Helping Koah feel like every other child
I believe helping a child with CF feel included within their school community is one of the most important things a school can do. Sometimes it’s the small changes that make a big difference, like allowing a child to take their Creon in the classroom rather than having to go to the office at every break.
It can also mean having good communication between parents, teachers and hospital teams so everyone understands the child’s needs and can work together when things change.
I feel very fortunate that I haven’t had to advocate heavily in this area because our primary school has consistently gone above and beyond to support Koah and his CF. I believe this is largely due to the education and guidance staff received, which helped them understand CF and respond with both care and confidence. Without CFWA, I don’t think our transition to full-time school would have been as smooth as it was.
Is your child getting ready to start school?
If your child with CF is preparing to start daycare, Kindy, Pre-primary or school, you might be feeling some of the same worries I did. You don’t have to navigate it alone.
CFWA’s Schools Program can work with your child’s education setting to help staff understand CF, your child’s individual needs and the practical considerations that can help them participate safely and confidently in school life.
For us, having that support in place gave me peace of mind and helped Koah get on with the most important part – simply enjoying being a kid at school.
Learn more about the CFWA School Education Program here.