The Cystic Fibrosis Site

Hello, my name is Samantha Everly, and I want to discuss my personal experience with Cystic Fibrosis (CF). To start this off, I want everyone to know that I am not the one suffering with CF, but my seventeen-year-old sister, Jessica, is. She is the main reason I am creating this site because she is a very dear sister to me, and I cannot picture life without her, even though I know that one day, this dreadful disease will take her life. I am hoping that maybe this site will change that. Maybe I can inform just one or two people that will raise enough money or volunteer enough of their time to find a cure for Cystic Fibrosis. It is said that in our lifetime there definately will be a cure for Cystic Fibrosis, but I am wondering if it will be Jess' lifetime, too?

In order to be born with Cystic Fibrosis, both parents must be the carrier of the CF gene, and if they are, then the child has a 1 in 4 chance in getting the disease. I am obviously the lucky one, but I am constantly asking myself why my sister got stuck with the disease and I didn't. She is in the teenage rebellion stage, where she does not want to take any of her medications, do any chest PT, or do any of her breathing treatments. I understand it is A LOT for her to do in order to keep herself out of the hospital, but I just wish she would understand that those "rituals" are what is keeping her alive. I would take the disease from her in a heartbeat.. I want her to experience a normal life without all the pain.

I actually have a little story to tell everyone about my sister's disease, so here it goes.. When my sister was around the age of four, my mother noticed that Jess was getting sick way too often. She was always coughing, she had trouble picking up weight, she had a hard time breathing, etc, so my mother made her an appointment at Uniontown Hospital to see what was wrong. When the doctors checked her out, my mother was informed that my sister had "allergies" and to just give her medication to solve the problem. My mother knew that an allergy wasn't to blame for my sister's ill-state. My mother then took the one-and-a-half hour drive to Children's Hospital of Pittsburgh to get a second opinion. Jess had an appointment scheduled with Dr. David M. Oreinstein, who is the Director of the Cystic Fibrosis Center and Pediatric Pulmonology Department in Children's Hospital. He gave my family the horrific news that Jess had Cystic Fibrosis. "Cystic Fibrosis?" my mom had asked him. At the time, we had no clue what the disease was, because it was not a well-known illness, even though knowledge of the disorder is getting more common.

Years later, in February of 2002, I was getting off the school bus from a long day at school. As soon as I departed, however, I knew something was wrong, because my mother was not in the car waiting for me. Instead, my estranged father was waiting for me in his pickup truck. I automatically started crying in fear of what he was about to tell me. Jess was at Children's hospital in the Pic-U, and the doctors were striving to keep her alive. The reason was while I was in school, both of my sister's lungs had collapsed, and she was unable to breathe. I was absolutely terrified. Jess was immediately operated on, having part of her lung removed. I wasn't completely sure what that meant, being only 12, but when I saw her, she was unable to walk, talk, or even breathe on her own. We were even told to not be surprised if she was unable to move onward. Basically that meant to be prepared for her to die... Yet, after months of praying, and the unbelievable care of the Pittsburgh doctors, Jess was getting better everyday, little by little. Finally her respirator was removed, her feeding tube was taken out, and she was finally able to eat normally. When she first arrived back home with my mother and me, she was on oxygen for another six-months to a year, but was eventually taken off it. She is now doing remarkably better, especially after being told she wouldn't live past the age of nine.

So basically that leads us to where we are now. New medicines are being invented and tested all the time, prolonging Cystic Fibrosis patient's lives, but for how long? Like I mentioned, my family, as well as thousands across the country are just waiting for that phone call from the hospital telling us that the cure for Cystic Fibrosis has been discovered. That day is still just out of reach for us, but we will never exclude this from our dreams. But will it be too late for some families, just like it has been already for the countless individuals who have been waiting for a cure, only for it to never have come to them? The day will come, but when?