Daniel Ferris

Over 8 years ago, Amanda and I learned that our then-unnamed baby would be born with Cystic Fibrosis. At first we were devastated, but as we learned more from the CF clinic at Children's Hospital and the CF Foundation, we felt resolved and hopeful. 

It hasn't been easy - and the reality is things could turn on a dime - but because of breakthroughs in medicine and other adjustments in physical therapy and diet, Julia is doing well. She takes almost 20 pills daily, has far more interaction with doctors than she'd like, eats a high fat, high salt diet but still has trouble gaining weight, and does Chest Physical Therapy and nebulizers daily. While this is tough, we know it could be worse, and that always will loom over us without additional advancements and ultimately a cure. 

I learned the hard way how difficult CF can be when I was hospitalized twice for week-long stretches a couple years ago with acute pancreatitis. It turned out I myself have a very rare pathogenic variant of CF myself. With medication I've avoided further flares of pancreatitis (so far), but this experience has shown me the importance of continuing research and developing new medications / therapies for the entire CF Community.