My Xtreme Hike Story

It has been 6 years since we were thrust into the story of CF. Before even welcoming our newborn daughter to the world, we were enveloped with the fear and unknown that comes with parenting a child with a life-threatening illness. CF is different now in that the overall health and prognosis for so many living with the disease is hopeful but that does not take away the fear and daily work. It doesn’t change how up to 20% of the population still doesn’t qualify for the newer, revolutionary medications because of genetics or adverse side effects.

It is easy to celebrate the progress, but the fear of the future is still very relevant for our CF community. Finley’s health is so intricately tied to a single medication so the fear of losing access is always lurking in the back of our minds. She is starting to ask questions about why she is different, why she can’t enjoy hot tubs or indoor water parks, why she can’t garden or go to a petting zoo. Infection control remains a heightened priority as there is simply not enough data to support shifting the traditional CF rules or treatment recommendations.

We are lucky in that she no longer requires enzymes to digest her food which has softened the daily burdens significantly. However, she still spends up to an hour each day connected to a machine designed to shake any excess mucus from her lungs. From the outside, she appears perfectly healthy, but we continue quarterly clinic appointments where she meets with a multi-disciplined care team (pulmonologist, dietician, social worker, pharmacist, and registered nurse.)

CF still dictates much of our schedule and weighs heavily on us as a family. We are so deeply grateful for the incredible outpouring of love and support we have experienced over these last 6 years. This year, we are striding AND hiking for a cure - thank you for continuing to stand with us and ensuring that the momentum does not stop until everyone can live a life free from the continued burdens of CF.