Starting School With CF
Starting school is a milestone for any child, but for families living with CF it can come with additional challenges and concerns. This was certainly the case when Darcy was preparing to start school.
Mum Susan wondered how her health needs would be managed in a busy classroom and how she could help the school feel equipped to support Darcy. Susan shares their journey to starting school with CF and what helped their family.
Staff Education
The support from our school has been exceptional. Throughout Darcy’s early years of schooling, teachers and staff have approached her care with openness and kindness, always welcoming conversations about what works best for her.
Very early in the journey, CFWA stepped in to support us. Through an online meeting (due to living regionally), the CFWA Education team facilitated a conversation between our family, the classroom teacher, school leadership and the school nurse. That meeting set the tone for everything that followed. It gave everyone the opportunity to ask questions, learn about CF in the school context, and discuss practical ways Darcy could be supported. Most importantly, it meant we were working together from the start.
Darcy’s teacher attended a CFWA online education session at the start of the year and other staff engaged with CFWA’s resources. Knowing staff were accessing reliable sources of information about CF and how best to support the needs of Darcy was incredibly reassuring.
The Outside of School Hours (OSH) educators also engaged with CFWA’s education resources. Their willingness to learn about CF means Darcy can participate fully in after-school care alongside her peers.
Student Action Plan
Since then, CFWA has continued to support our family and Darcy’s educators. Each year we liaise with the Community Educator to update Darcy’s CF Action Plan. This is shared with both the school and OSH service, so everyone involved in Darcy’s care understands her needs. These plans provide guidance around infection control, environmental risks, nutrition and hydration, but they also build confidence in staff caring for Darcy.
Late last year, Darcy was admitted to PCH. It was a stressful time for our family, but we felt incredibly supported. CFWA provided guidance and reassurance, and the school stayed connected through the hospital education service so Darcy could maintain her connection with learning and her classmates.
Nutrition & Enzymes
One of the most important aspects of CF care is nutrition. Each day Darcy brings her lunchbox with small post-it notes that I write each morning, indicating how many capsules are required with each item. At first, an Education Assistant helped Darcy manage this. Gradually, that responsibility has shifted to Darcy herself. She now reads the notes and counts her enzymes independently.
It may seem like a small milestone, but it is incredibly important. It allows Darcy to eat normally with her friends and build confidence in managing her health. Independence and self-management are the long-term goals, and we are appreciative that our school supports this approach.
Community & Classroom Education
At the start of each year the school also shares a CFWA letter reminding families to keep children home if they are unwell. This simple step helps protect Darcy and reflects the care of our school community.
CFWA has also provided resources that help younger students understand CF. In Kindy, Darcy’s teacher read the CFWA children’s book My ABCF at School with her class. It helped Darcy answer the natural questions from curious classmates and normalised small differences in her routine, such as taking enzymes with food.
Today
Looking back over Darcy’s journey through the early years of learning, what stands out most is the community that has supported her along the way. CFWA has helped make that possible.
Today, Darcy is a happy, active and thriving Year 1 student. She loves school, enjoys learning with her teacher and friends, and is developing independence in managing her health.
That didn’t just happen. It happened because of the commitment from our school community, OSH educators, CFWA, PCH healthcare team, family and friends all working together to ensure CF does not limit Darcy’s opportunities.
And for that, our family is deeply grateful.
Learn more about the CFWA School Education Program here.