Raising a Child with Cystic Fibrosis (CF): A Mother’s Story, Daily Routines & Real Talk
Females Thriving Over ThirtyShow Notes
In today’s episode of Females Thriving Over 30, Soraya and Jasmine sit down with Aimee Barber-Faulkner to talk about her daughter Harper’s cystic fibrosis journey—from the heel-prick diagnosis and those overwhelming newborn days to today’s school routines, medication (like Creon) timing, infection-risk management, and the power of a supportive care team. This is a compassionate, practical conversation for any parent, caregiver, or friend wanting to understand CF beyond the headlines. 💛 We cover the real life stuff: what CF is, how modulator therapies (e.g., Kaftrio/Kalydeco) are changing outcomes for some genotypes, what school looks like (risk assessments, hand hygiene, sand/water play limits), how to explain meds to little ones, the emotional rollercoaster for parents, and hope. 👉 Comment for community support: If you’re parenting a child with CF, what daily habit or mindset shift has helped the most?
Cystic Fibrosis Trust (UK) – information, helplines, family resources
Cystic Fibrosis Foundation (US) – research news, clinical care info
Your local CF centre’s family liaison / psychologist for school transitions
Aimee Barber-Faulkner on Instagram: @aimeelbfaulks_
What cystic fibrosis is (plain-English overview)
How the diagnosis commonly shows up (heel-prick test, early signs)
Day-to-day CF care: Creon, timers, high-fat nutrition, and supplements
School & social life: risk assessments, inclusion, and safeguarding (e.g., Pseudomonas risk)
Modulator therapies (who they help and why access varies)
The emotional journey: grief, guilt, resilience—and finding your “new normal”
Practical support: charities, resources, and how to connect with other parents
⏱️ Chapters (Timestamps) 00:11 Intro & weekend catch-up (pageant chaos!) 12:46 Meet our guest: Aimee Barber-Faulkner 14:24 What is CF? Genetic basics, heel-prick test, early signs 19:41 First hospital steps: the CF multidisciplinary team 21:50 Creon & feeding: how enzyme timing works (20-minute window) 25:07 School menu planning, fat counts & independence skills 29:48 Starting reception: handing over responsibility & risk assessments 33:32 Daily limits at school (wet sand/water play, hygiene) & Pseudomonas risk 36:54 The power of a great CF team (nurses, physio, dietitian, psychologist) 37:58 Modulator drugs (e.g., Kaftrio/Kalydeco): hope & access realities 39:19 Aimee’s advice to newly diagnosed families 41:16 Resources & support (charities, where to find community) 42:44 Closing & how to follow Harper’s journey —---- cystic fibrosis, cystic fibrosis story, cystic fibrosis children, cystic fibrosis parenting, CF parents, CF mom, Creon, CF diagnosis newborn, CF daily routine, CF support UK, chronic illness parenting, motherhood over 30 #CysticFibrosis #ParentingJourney #MumLife #ChronicIllness #CFWarrior #Creon #Kaftrio #Kalydeco #FemalesThrivingOver30 #Podcast
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