Every once in a while I think about all the work it takes to raise money for Cystic Fibrosis and ask my self “Why do I work so hard for this”. Why form a corporation, deal with all the IRS headaches, spend countless hours asking for donations, and spend hundreds more building a raffle car and trying to sell tickets. Why? For what?
This morning, I decided to remind myself. Please read on because one out of every twenty eight, or less, of you reading this, carry Cystic Fibrosis. Who knows, maybe I do.
We all know that CF is the number one genetic killer of children and young adults in the US (and other countries) today, that it causes digestive and irreparable lung damage, diabetes, liver damage, kidney and lung failure, pneumonia, … But what I didn’t realize, is that you could be diagnosed with it at any time, any age, since it often ‘hides’ itself as appearing to be another type of decease.
“Happily ever after is something Kate and I never got to experience. We never got to experience the joys of raising children, or celebrating a 25th year anniversary, or simply just growing old together.” http://www.princesskatherine.net/ownwords.html
Progress is being made. But it is not easy an easy existence…
“In an odyssey that took her through every major hospital in New England, from Bangor's Maine Medical Center to Boston's Children's Hospital, year after year she made the rounds. No-one seems to know how many days Karen spent in hospitals. As the years rolled by, days in began to match days out, the time between hospitalizations becoming shorter and shorter. With operations buying time and constant medication a finger in the dike, her normal life became in, not out.” http://karensclimb.com/karen.htm
Karen died six days before Christmas… she was 25.
As I sat and read story after story about people that suffer from CF and those who have lost the battle, I couldn’t help but think how my wife and I would feel knowing that it was from us, our genes, from which the decease killing my child came. They even have a name for it, “carrier guilt”. I read page after page telling parents not to feel guilty… but I still can’t help but wonder how I would feel. There are counseling and support groups set up just to help the parents and the healthy siblings of people with CF. For those people, please take care of yourself, your child needs you.
As a child, my father worked for St. Jude Children’s Research Hospital. I saw first hand the tragedy of kids, some my own age, wither away and die. I know there is much tragedy in this world, Cystic Fibrosis is one of them.
I remind myself that 100% of the proceeds from the raffle car go to the CF foundation… and I remember why I do this.