I am a mother to four incredible, talented, and active children; Ryan (16), Kyle (13), Hannah (11) and Claire (7). During the summer, they practically live on the basketball court, at the beach or in their grandmother’s pool.

Something people may not realize when first meeting my family is three of my children have cystic fibrosis (CF), a rare genetic disease. I hadn’t heard much about CF before my first son, Ryan, was diagnosed with a rare mutation at 11 months old. My youngest son, Kyle, and my youngest daughter, Claire, were also diagnosed with a rare cystic fibrosis mutation at birth. There is such rarity to having CF, let alone having three children with different genetic makeup. 

When we first heard about a new life changing drug for CF we all had so much excitement and hope that there would finally be a drug for our kids. As a CF parent, there are a lot of mental challenges that come with trying to make sure your children are getting the best medical care while living as normally as possible. I couldn’t believe that my kids could get one step closer to not missing out on things that other kids get to do. All of those hopes came to what felt like a breathtaking punch to the gut when we were told that because of their genetic makeup, they can’t benefit from the drug. 

Although we are excited about how far CF research has come and for the people who can benefit from this new drug, it’s hard to know my children, and so many other people, are left feeling like outsiders on their own team. 

While we anxiously wait for the day when it’s our turn, we continue to keep our kids as healthy as we can and hope that researchers will develop something for our kids before even more damage is done to their lungs.  That hope is how we get through every day.