If you start off saying a child is special because she suffers from a handicap, that is a disservice because you are robbing her of what she might become on her own_Frank DeFord
My parents lost my sister to cystic fibrosis before I was born, so when I was diagnosed with that same disease at birth, my parents were understandably protective of me. They always sought out the best doctors at the best facilities available and learned as much about CF as possible. In spite of their constant, loving support, I often felt alienated when I was younger – and reading all the negative facts about my disease made it even worse.
As I grew up and started playing tennis in high school and intramural sports in college, I found myself feeling more and more comfortable allowing people into my life, allowing them into my world of cystic fibrosis. Sports helped my health and were a type of therapy for me. I have found exercise to be both physically and mentally therapeutic. Every time I work out or play a sport I feel like I am taking an active role in beating CF.
My toughest day with CF was the day I learned that my lung function was down severely while my wife was pregnant with our second child. I struggled trying to deal with my own mortality during such an important time in my family’s life. Although I did not deal well at the time, looking back I realize that going through that taught me how to effectively deal with my disease and the ups and downs that accompany it.
While I have gone through rough patches, I have remained compliant for most of my life. I take medications and do therapies regularly and try to stay as active as possible. I am constantly motivated by my wife and children. I want to experience every single one of their celebrations with them. I want to see my kids grow up and live for decades with my wife. My family pushes me to forget the statistics of my disease and to see every day I have with them as a gift; to push my way through the difficult days and live to see a cure.
Color is… green
Food is… sushi.
Holiday is… July
Movie is… Karate Kid
Musical artist is… Foo Fighters
Sports team is… Atlanta Braves
I love spending time with my kids, playing softball, and keeping fish tanks.
I am most proud of my marriage and two children, the three books I have written, and to be the first person with CF on the Georgia CF Board.
If I could visit anywhere in the world, I would go to Italy with my wife.
My family and friends would describe me as relentless.
If I could give someone just diagnosed with CF any advice, it would be… Do not read statistics – every CF case is unique. Work hard and appreciate your life. Doctors may be able to measure lung function, but they can’t measure your heart.