CYSTIC FIBROSIS

     " .... A few hours before sunrise the nurses noticed that John's little belly had become distended and residents began stopping by to examine him. Nobody thought it was serious. When the nurse arrived she got a much more concerned look on her face and then asked us if we had a family history of cystic fibrosis.

 

   We panicked. We didn't know what CF was but we knew that it wasn't a good thing. We knew they had walks for it, maybe even telethons. We tried to calmly say, "No, not that we know of" to her, but the terror in our voices must have been palpable. She said, "Well then let's not get ahead of ourselves, it could be another type of blockage. Let's take some x-rays and we'll know more about what we are dealing with." The next eighteen hours were spent going between the N.I.C.U. , radiology, surgery, and a countless number of waiting rooms. We tried to assure ourselves that it was probably something else, but we knew that we were going to have to deal with the fact of knowing that our baby boy has Cystic Fibrosis.

 

   John grew stronger and started breathing on his own. We learned about enzymes and physical therapy. We were able to take him for a walk outside and the two of us held him tight as the sun and fresh air touched his face for the first time. we brought him home.

 

  Over the next three years we watched a newborn grow into a little boy who loves to play soccer, flirt with girls, and talk to his grandfather on the phone. He watches Sesame Street while doing physical therapy and then eats pancakes covered in syrup and butter. He carries his enzymes in his Harry Potter lunch box and can tell you exactly where a linebacker lines up on defense. John has CF and it is something that we are always conscious of, but it does not define him or constrain the incredible power of his spirit in any way...."

 

To learn more about John's story, go to: 

http://patients.dartmouth-hitchcock.org/cystic_fibrosis/personal_story_johns_story.html