This is a long post but it may help you better understand why I do what I do and a little more about me

Growing up I complained about treatments, hospital stays and just about everything having to do with the discipline of CF care. I had years in school that never included a hospital stay and I had years that did, a couple that included a lot of hospital stays. I never seemed to have trouble making friends but there were very few close friends that knew my CF life. Most of my high school friends would be learning something if I showed them the pictures that I have posted to this wall. I had friends that were smart (nerds), athletic (jocks), country (redneck) and friends of both white and black. I was even voted class clown a couple times. Imagine that.
But one group of friends was extremely special to me. When you have a serious disease and you attend school like everyone else, you often feel as if you have shut the door on the real problems and nobody would understand. That’s the beauty of those “hospital buddies”. They do treatment s like you; they get IV’s like you and take the pills like you. I felt they were so in step with what I do on a daily basis they have to see me as the “same” as them. And they did to some degree but that is what changed my life forever on one night.
We used to get out of the hospital on pass and go to the mall, movies and dinner. One night we all decided to go out on pass and see Forest Gump. Everyone had a ride except for Mary. Mary was a couple years younger than me and I was doing one of my “college spring break tune-ups”, so I had my car and was able to drive. 
I had just been in a friend’s wedding and caught the bride’s garter, silly ritual because I wasn’t the next bachelor to get married. I had hung it from my rear view mirror and left it there. I actually was on IV’s during the wedding. Mary and I had a conversation that changed my life and became the story behind all that I do.

Mary noticed the garter and asked me “Who’s garter is that?”
I replied “I caught it at a friend’s wedding and never took it down” After she sat in the passenger seat and pondered for a moment she asked “I bet you date a lot?”
I told her “a few times, not much”.

Then she spun my world around 180 degrees and uncomfortably asked “If I were normal, would you date me?” My heart sunk so deep into my stomach it made me sick.

I recognized at that moment that these friends, I think I have so much in common with, saw me as “normal”. That it’s not natural for a 11 year old boy to look through your college books and get upset because he knew college was questionable in his future. Showing pictures of your high school prom shouldn’t bring mixed feelings to a girl the same age as you.

So I prayed that night when I had returned to my hospital room. In fact you can say that I established a “covenant” with God. I promised Him that as long as He extend my life, for as long as He desired, that I will take part in any research, drug trial, treatment SO that when I die and leave this earth, I leave it with CF having a cure or being totally manageable.

I had a new definition of the word “fair”. For a child to never go to prom, is not “fair”. For a person to never experience a simple high school date, is not “fair”But most of all for me to as blessed with the health that I do have, and squander it away would not be “fair” to them.

They deserve to be remembered. And the best way to do that is to live life as full as I can and do everything in my power to make CF care better and the life expectancy longer.