It's estimated that about one in thirty people carry a CF-causing mutation. Justin and I were both that one in thirty. Our chance of having a child with cystic fibrosis was one in four. Meet Sun.
Cystic Fibrosis is very much an invisible illness. You can't see that thick, sticky mucous wreaking havoc from the outside. Before Sun, Justin and I had never knowingly met another human being with it. It's hard to look at this rambunctious five year old and think he would need so many interventions to be as healthy as he is, but it's true. He needs enzymes with every snack/meal to digest fats/proteins/carbohydrates, multiple daily breathing treatments involving inhaled medications to help clear the airways, extra fat-soluble vitamins, extra salt, a CFTR modulator taken every 12 hours with fat containing food, a diet high in calories/fats/proteins to compensate for poor digestion and help fight lung infections, and more. Frequent doctor's appointments are also necessary to keep an eye out for lung infections, proper weight gain, and routine blood work to monitor lab results. If this sounds like a lot, it's because it is, and this is very likely as easy as it gets. CF is a progressive, lifelong illness that is difficult to manage- A day by day journey. Life expectancies have gone up due to all of the things I just mentioned, but it's still not exactly dreams gone wild.
When the Cystic Fibrosis Foundation announced its Path to a Cure initiative, promoting the development of new treatments tackling the underlying causes of CF, with the final goal of finding a cure for the disease- THIS. This is dreams gone wild, and it makes us feel an intense excitement for what the future could look like for everyone fighting this disease. Justin and I hear the whispers of cystic fibrosis in our brains non-stop. It's changed our lives in just about every way. What is this next generation of therapies that the CFF is helping to investigate? We can't wait to hear what's coming next! Let's make the future brighter for all of those fighting this disease. You really can make a difference, no matter what the amount.
Thank you everybody!!!