About Cystic Fibrosis
Cystic Fibrosis also known as "CF" is a genetic disorder that
currently affects more than 30,000 children and adults in the
United States, (more than 70,000 Worldwide). In the U.S., there
are promising new treatments in use and even more on the horizon.
Your Support Will Help Add Tomorrows Every Day !
Support research funding through the Cystic Fibrosis Foundation
...and I have Cystic Fibrosis
Joel's Story
I was born at 10:04 p.m. on August 14, 1999, and I weighed 6 pounds and 12 ounces. Mom and Dad were real excited that I had arrived safely and that I appeared completely normal with all my fingers and toes. (Why is it that parents always count a newborn’s fingers and toes?)
Everything seemed normal until Mom said I wouldn’t eat. 24 hours after I was born, Although my family assumed my first ride would be home in the family van, it turned out to be a helicopter ride to St. Louis Children’s Hospital. I spent five days in the hospital while they ran many tests. Not only was I not eating but I couldn't go to the bathroom either. Mom and Dad didn't know that bowel obstruction was a sign of Cystic Fibrosis. Dad said the doctors would come by each day to ask the same question, “Is there a history of Cystic Fibrosis in your families?” Of course, their answers were “No!” They didn’t know anyone on either side of the family with the disease. The doctors decided to run one more test,this time on my parents.Since I was now eating and going potty, they sent us home with an appointment to see my pediatrician in five days.On August 24, 1999, I went to the doctor to be weighed. We were all in for a surprise! My doctor sat my family down to explain the results of the blood tests. It was official - Mom and Dad were both carriers of Cystic Fibrosis and I was the unfortunate one. I had a 25% chance of not being affected, a 50% chance of being a carrier, and a 25% chance of having the disease - the odds were on my side, right? WRONG! At tens days old, I had been diagnosed with CF. From here, the true battle would begin. Nebulizers, physical therapy to break up the mucus in my lungs, liquid medicines, and little enzyme pellets. My family had to take lots of precautions against germs and being around people who have a cold or who are sick.My mom even had to make a sign for my stroller that said, "I know you would love to touch me and hold me, but I have Cystic Fibrosis and germs are really bad for me. Thank you for caring and understanding." The worst thing for a kid like me is to get sick with a cold or a lung infection. From now on, this was going to be a big part of our lives, and we had to accept it!
Mom says I have been a very lucky little boy so far. I haven’t been sick a lot. I have only had one additional hospital stay, and that was when I was 18 months old. I was diagnosed with Pseudomonas (a nasty germ only affecting CF kids).
I’m sure you are reading my story because you are interested in my disease or because you are helping raise money for research. I may only be seven years old, but I know what all this means. It means the doctors will be able to keep myself and others with CF healthier through better medicines and hopefully someday researchers will be able to cure my disease.