My wife Dana and I received a life changing phone call while we had our 2 sons (2 years and a newborn, at the time) at a local photography studio. The nurse from our pediatrician's office wanted to let us know that Easton (our newborn) had some abnormal results on his newborn screening. All I remember her saying was something related to CF. I couldn't listen to what she was saying.
After many phone calls between myself and different providers, we had Easton scheduled for his first sweat test. We were confident that this would be a once and done. This sweat test would be completed and we would have an answer on the same day. Little did we know, some sweat tests are inconclusive. Easton's test came back a few hours later --- INCONCLUSIVE. We had to schedule another sweat test, but the doctor suggested waiting AT LEAST one month.
The date of Easton's 2nd sweat test came. Again, we waited at the clinic for the results. Again, his test came back -- INCONCLUSIVE. Easton needed to have a DNA blood test. He blood draw was August 14, 2014. We were told there was a 60 day waiting period for results from the blood test. 60 DAYS!
75 days later -- I received the phone call I had been waiting for. It was a phone call I wanted SO badly, but, at the same time, I didn't want to know what the doctor was going to tell me.
The blood test confirmed that Easton was a carrier of CF, but it also confirmed that he tested positive for cystic fibrosis.
So, here we are -- supporting the Boomer Easison Foundation and PRAYING that we can make CF stand for 'CURE FOUND'!!
Easton is currently taking Kalydeco (Ivacaftor) which approved for Easton on May 17, 2017. He started taking Kalydeco at the end of June 2017. We pray that Kalydeco is doing its job and continues to help keep E healthy!
We will continue to pray that Easton continues to be as healthy as he has been over the last 4.5 years!
Easton may have CF, but CF will NOT have him!
Our family is forever grateful to those who continue to support us on this CF journey, those who support research and fundraising that raises awareness for CF!