On March 4th, 2011, I celebrated my 38th birthday! For the first time in my lifetime I officially surpassed the median Age of survival for a person with Cystic Fibrosis, which currently stands at 37.4 in the US. I obviously would not have done this without the support of multitudes of people. Family, friends, doctors, researchers, nurses, therapists, strangers, Surgeons, and of course 2 Donors and their families! It is overwhelming to think about the web of life that is weaved into my existence. Like a snowflake, an infinite number of possibilities created. But to me, I have always lived my life beating to a drum that has kept me on a clear path. A higher power, beyond what I can comprehend, beating at the right frequency.
There are still plenty of children who never live to be adolescents or adults. Many Adults who perish right when their life is at its cusp! But real progress is being made. The median age is also skewed a bit because of the multitudes of benign or less severe mutations being discovered on the defective chromosome. Some of these people are not even diagnosed until their 40's or 50's. So, it is important that we don't get too excited by the number of 37, or when it jumps to 38 or 39, which it probably will shortly do. We need to focus on the children and the medications and research being developed to prolong their lives.
I am going to keep this post short for now, so everyone can relish in the beauty of the number 38!