Story

It’s been eight years since we learned that our six-week-old son was not gaining weight, labeled with “failure to thrive,” and sent to the local hospital. A week of nonstop testing and frustration ensued. We were moved to a children’s hospital, which to new parents seemed like the scariest thing in the world. It wasn’t, but the words we heard the next day were. It was both a blessing and a curse. We were given a diagnosis- cystic fibrosis, medicines and news of a foundation that was working diligently to develop treatments. We were also given the number 32. This was the average life expectancy. Thirty-two. Now, to parents of an active, vibrant, amazing eight-year-old we can’t even imagine him scratching his potential by that age. While the age has been raised by the work of Cystic Fibrosis Foundation to 37, it’s still not enough, not even close. Here’s the thing about CF, it doesn’t just start in the mid-thirties and end your life early. It is an every day, all day progressive disease. Joey’s lungs are always congested. The germs he catches never go away. Each day starts with 30 minutes of chest physical therapy, inhaled treatments and lots of coughing and trying to clear the lungs. All meals require enzyme pills to digest his food. To reach their 30s most CF patients require donor lungs or other organs that have to be replaced because cystic fibrosis has caused the originals to fail. Joey has a feeding tube to provide him with half of his daily calories overnight. Without it, he wouldn’t have the energy to be a “normal” second-grade student, play soccer or be a Cub Scout. It takes a lot of work and a lot of treatments to keep a chronically-ill child healthy. He WOULD NOT be here today if parents and doctors in the 1950s didn’t decide it was time to stop accepting a life expectancy of eight. Eight. Joey’s age now. Thanks to almost 60 years of dedication and determination and money, JOEY IS ALIVE TODAY. One of CFF’s mottos is “Money Buys Science and Science Buys Life” Video story: http://www.youtube.com/watch?v=4bVRV8TIFpM