Samantha Fuller

Why do I walk?

On December 28, 2012 we welcomed a beautiful baby boy, Ethan, into the world. He was absolutely perfect. In the 3 days we were at the hospital, he had lost 12 oz. The pediatrician at the hospital told us to make sure we get in with a doctor soon after we were discharged so his weight could be checked. Because it was a holiday weekend, we were unable to get in for over a week. During our time at home, I noticed some things that seemed a little off. Every thing he ate seemed to run right through him. Since this was our second baby, it just didn't seem normal to me. I shared my concern with his pediatrician and she assured me it could be normal, but we would continue to monitor his weight because he wasn't gaining.

When Ethan was 4 weeks old, I received a call that terrified me. Someone from the place that does the newborn screenings called and asked why I hadn't taken him for a sweat test yet to see if he had cystic fibrosis. Cystic fibrosis?! What the heck was this lady talking about?? For some reason, the results of his newborn screen were never sent to his pediatrician's office, which delayed when we were able to get him in and sweat tested. After taking him back to the ped, she was able to get him an appointment to be tested for cystic fibrosis right away.

In order to test for cystic fibrosis, they do a sweat test. They stick little electrodes to the arms that make the person sweat. They then collect the sweat and test the amount of chloride in it. Another way to confirm cystic fibrosis is with a blood test.

The sweat test took about 45 minutes. They said it would take about an hour for the results. We walked around the hospital and grabbed lunch while killing time. We remained positive. When we returned to that tiny room and opened the door, all hope was lost. Sitting in the room were 2 doctors and a social worker. I knew before they said a word, the test was positive. My baby boy had cystic fibrosis.

I will never forget that day. There was tons of information thrown our way. I felt so many emotions all at once. I fought the tears. I fought the fear. I held my still perfect baby boy and I held him tight. So many thoughts and questions went through my head. I blamed myself. Why didn't I know this disease existed? Could I have prevented this? How could I put my child through this?

Things at home were tough for the first few months after he was diagnosed. We had to get used to his new routines. There were medications to take everyday, therapies to do, and lots of doctors appointments. Slowly but surely, things started to seem almost normal.

Since his diagnosis, Ethan has been admitted to the hospital more times than I can count. Whether he is in for a lung infection, GI cleanout, sinus infection, or surgery of some sort, he continues to amaze me. He takes everything he has to do in stride and just goes with the flow. He shows me every single day what true strength is.

Ethan is able to be very active and it has helped his lungs tremendously. He plays football and is a linebacker and runningback. He also plays soccer and football. He does very well in school even though he is absent frequently for various reasons. His dream is to be the first player in the NFL with CF. 

Please consider donating to the Cystic Fibrosis Foundation. CF affects the lungs and digestive system of 30,000 people in the U.S. and 70,000 people worldwide. They all need a cure. I want my little boy to be free of breathing treatments, chest therapy, and IV antibiotics. 

To learn more about cystic fibrosis, go to: www.cff.org

To learn more about Ethan, go to: www.facebook.com/ethanscfsupportpage