Team Sun

It's estimated that about one in thirty people carry a CF-causing mutation. As it turns out, Justin and I were both that one in thirty, making our chances of having a child with cystic fibrosis one in four. We of course didn't know this at the time and Sun's diagnosis was a complete shock. I've learned that's usually how it goes- no known family history or prior knowledge of the disease, and looking at this wild six year old now, you would never imagine such a major concern.

Cystic fibrosis is a progressive, lifelong illness that is difficult and time consuming to manage. The goal of treatment is to slow progression: daily airway clearance, enzymes with food, extra vitamins and salt, a CFTR modulator, and more. Additional measures are taken to avoid environmental risks such as respiratory viruses, bacteria typically found in water and soil, mold/mildew, fungus, even dust. You can probably imagine how it could consume you as a parent, trying to protect your child from just about... everything.