I'll start my update with where I left off with an saved, unposted blog I began back in September some time ago but never got around to finishing. I had started it off with the title "What are the odds?" Which at the time was super significant in our lives and my baby sister's. She and her fiance, Nick were married on August 25th and a day before we got the news whether he was a CF carrier or not. We had already learned that she was a carrier many months before so we were all holding our breaths...
This is a pic of Emily and Cayden (her godson)
So, what are the odds?
1 in 400 to be exact.
1in 400 American marriages involves both a husband and a wife with the CF mutation.
When both parents are CF carriers, each of their
-a 1 in 4 (25%) chance of having CF;
-a 1 in 2 (50%) chance to be a CF carrier; and
-a 1 in 4 (25%) chance of not carrying the
If one parent is a CF carrier, and the other
parent is not a carrier, then each of their
-a 2 in 4 (50%) chance of being a
CF carrier; and
-a 2 in 4 (50%) chance of not carrying the
altered CF gene.
So after all the waiting we finally learned the Thursday before their wedding that Nick was not a CF carrier. What a huge relief for our family.
So at this point here is what we know about both of our family's genetic makeup:
Sister Becky IS a carrier (husband is not).
Sister Tamara is NOT a carrier.
Sister Jenny is NOT a carrier.
Sister Emily IS a carrier (husband is not)
Sister Ashley is NOT a carrier.
Brother Isaac unknown.
Kickball had been consuming most of our time and finally is over! It was a fabulous day once again bringing in over $11,000 for CF. This year I had the tshirt design already dreamed of a year in advance...I couldn't wait for the reveal: A # 7 made up of smaller words about CF. The reason for the 7? It is the chromosome that the CF mutation is found on.
Finally, our last excitement was being interviewed for Madison Magazine's November issue featuring local people that benefit from non-profits in Madison. Last year they did a piece on numerous non-profits including the Madison Chapter of the Cystic Fibrosis Foundation and thought it would be awesome to showcase those that benefit this year. I can't wait to see which pictures they use from our photo shoot, but currently this is my favorite.
This summer and fall we had the opportunity to meet so many wonderful new families affected by CF and we feel so fortunate be able to share even just a piece of our journey with them. If you are visiting here for the first time I hope you find a place of faith, hope and love but also encouragement to continue fighting! Just a few weeks ago the Foundation released new data that VX809 is moving forward and clinical trials with patients is set to begin in 2015-2016. I have decided from that moment (and with the encouragement of a dear friend) to go to the North American CF Conference every year until that drug is available to patients. My hope is that all my dear CF mamas that I have met on Facebook (not yet in "real life"...which is funny when you think about it, because I feel closer to these women than they will ever know) will also be able to join me. I want to be there when the exciting news is announced. When history is made.