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.
The Cystic Fibrosis Foundation is driven by a dream of a cure for every person with cystic fibrosis and a life free from the burden of this disease. They are truly the reason we have so much hope for the future and we know that raising money to fund research is the best thing we can do for Sun. We've gotten to see progress first hand, and Sun is now benefiting from a medication, Trikafta, developed within his lifetime! It eases our minds to see the drug development pipeline and know there is work being done towards genetic based therapies that could ultimately lead to the cure we dream of. To everyone who has ever donated to Team Sun, thank you! You are changing the future!
We are forever grateful,