At 18 weeks pregnant we found out via amniocentesis that our son Ethan has a genetic disease called Cystic Fibrosis. It is an autosomal recessive disease meaning that both parents must be carriers of the gene (have 1 copy) and children of 2 CF carriers have a 25% chance of having CF. 

CF is disease that that damages the lungs and digestive system.

Cystic fibrosis affects the cells that produce mucus, sweat, and digestive juices. It causes these fluids to become thick and sticky. They then plug up tubes, ducts, and passageways.

My cousin Ashley also suffered a life long battle with the disease, she even underwent a double lung transplant. Sadly she passed in her 20s. When my cousin Ashley was born people with the disease were not expected to live past their 20’s. Now people with CF are living into their 50’s and beyond. 

Ethan currently takes a medication called Trikafta that helps the CTFR protein work more correctly and ultimately helps to prevent damage to the lungs over time but he is still not  cured. He takes enzymes prior to each meal to help his body absorb as many calories as possible. He also does breathing treatments and chest PT with his vest 2x a day. 

Ethan is a little CF warrior and amazes us so much!

Ethan and Ashley are why we feel so passionate about raising awareness and funds for the CF foundation. Thank you for supporting the “Ethan’s Entourage” team.