Growing up, I remember always wanting to be older than I actually was. I would often say, “I can't wait until I am … (fill in the blank with an age),” especially before I turned 21. Now, I try to think of age as just another number. But as a spouse to someone with cystic fibrosis, these numbers are frightening to me and have provoked a desperation for the search for a cure for CF.
I met my wife, Jen, when we were both still in high school. For me, it was love at first sight. I remember telling my mom the weekend after I met her that she was the one I was going to marry. Some might have called it young love but, even at the age of 15, I knew differently. Jen told me a little time later that she had CF. As a young man in love, it was not a big deal. We saw each other after school and would always hang out on the weekends. Our relationship was no different than any other relationship that I had been in. I did, however, research CF, so I was aware that Jen's health could start to deteriorate at any time. I decided that I would cherish every moment we had, live for the now and enjoy everything we did together.
But the research that I had done as a young man never left my mind. At that point, the life expectancy for someone with CF was 28. That seemed like such a long way away in the mind of a 15-year-old. As our relationship grew stronger and more loving, other considerations and decisions had to be made. There was college, marriage and then children.
That original life expectancy of 28 has increased to over 40 years. We are both in our mid-30s now and are thankful every day for our time together. But we realize that 40 is getting closer. When we were in our 20s, the life expectancy rose to 33. When we were 25, it went up to 35. And when we were 33, it increased to 37.
We have never let the life expectancy numbers define our thought processes when it came to decisions involving our family. But it scares me that we're not just chasing the numbers anymore, we are actually catching up to them.
Because we now have our precious daughters, our focus is even more steadfast and our determination even stronger to keep Jen healthy.
It is frightening to think that we will be in our 40s very soon. Again, I stress that I cannot let that be what defines us. We still live our lives as though CF is not what we are and wholeheartedly believe that Jen will win this fight and get to be a mother of the bride(s) and eventual grandmother. We want to continue to see that life expectancy number increase for all people with CF, but it would be even more incredible to know that one day CF will not be the cause of another person passing away.
That's why I fight. That's why I fight to raise money to help move research and drug development forward. I want there to be a time where CF life expectancy is never talked about again!
