Roller coaster of a life

Life has been in a bit of a tail spin lately. At the end of February, Casey and I attended a Leadership Conference hosted by the Cystic Fibrosis Foundation in Bethesda, Maryland. It was a jam packed 2 days of all the great things coming into our world. We got to meet some amazing people. We were shown videos of children and adults that have begun taking the newest wonder drug Kalydeco. It was amazing to hear their stories of living "normal" lives after beginning it.

Kalydeco is a drug that is center at one type of class of mutations. Unfortunately for us, it is not one of the mutations Cade has. Only 4 % of the CF population has this type. This doesn't make it any less exciting. It is the first drug that is aimed at correcting the underlying cause of CF. It will most definitely be throwing doors open for new drugs to come.

So back to all these amazing people we met. First was Bob Beall.  He is the CEO and President of the Cystic Fibrosis Foundation (CFF). He has been there for the past 30 years. To me, this mean this is not just a job to this man. He truly loves these kids! He was such an inspiration to watch and hear. I think he may have been more excited than me about the new developments in the CF world (only slightly though). He has been one of  the leaders in paving the way to a cure.

The second greatest person to meet was Dr. Preston Cambell. Dr. Campbell is a pediatrician from John Hopkins. He presented a scientific update on the latest and greatest drugs coming into our life! This man put so much into perspective for us. He could explain the most technical of information to where anyone could understand! We basically learned that we they are still working on a cure for our kids. we can be hopeful that within the next 10 years a pill could be available to Cade that will control this awful disease.

We also met alot of great parents. I think this was the greatest part of the conference for me. CF is such a lonely disease. Not one that I would ever wish on anyone. But still it's very lonely. For parents as well as the children. Until you live something like CF, it's very hard to understand what everyday life is like. We are told as parents to keep our kids away from each other. This is to prevent the spread of germs (because they so often culture bacteria you don't want them to give it to each other). Therefore, parents are often kept separated from each other as well. Thanks to sites like Facebook and different blogs I have gotten to know some of these other mamas. But i finally got to meet a few at the conference. Now I have a personality to put with the face! To me, meeting someone jut makes them a little more real. It helps fill the gap when you get to meet other moms living your life.

 This is Breck Gamel. We grew up minutes apart from each other. We never met until we found out through mutual friends that our boys had CF. She is such a great momma and a huge inspiration for me!


One of the greatest things I heard at the conference was quoted by a Geico executive (Yes, Geico is a big contributor to the CFF). He said some one once asked him how he did so much with the CFF. His response was "I don't know how but I do know why". I will never forget those words. They are exactly how I feel each day. And until all of our kids have control of this disease, I know why I'll never stop either.