In April of 2022, we welcomed our first child into the world and immediately had trouble helping her gain weight.  On her eighth day of life, her newborn screen came back with a notification that she likely had Cystic Fibrosis.  After meeting with her CF team, we started nutritional supplements, administering chest therapy, and discussing her overall treatment plan.  

When we were able to educate ourselves about her disease, we learned that our daughter was in the 2% of the CF population with the mutation G551D.  This mutation, one out of over 1,700, was the studied mutation used to create a modulator, Kalydeco, ten years prior.  She was able to be on this modulator at 4 months old, almost two years earlier than the rest of the CF population. At one year old, we tested her pancreatic function and she was cleared to stop taking enzymes as the modulator had reverse damage in her pancreas. So far, we’ve avoided scarring that often prevents absorption for those with Cf, leading to further health complications.  

We are thankful for our immense privilege in her mutation and continue to fundraise and advocate for those that are not able to be on modulators as early, if at all.  Without further research, drug advancements and access to healthcare those that we fight for could be left behind and definitely won’t see outcomes like our daughter. Please consider joining us in our fight to provide access for all as we search for a cure.