02 February 2012

For Gavin. For Brady. For Bryce.

Despite that I have felt disappointed that Bennett won't directly benefit from the new Cystic Fibrosis drug Kalydeco, the reality is I am actually super super excited for the friends of ours who will benefit.

Since those with Cystic Fibrosis are highly discouraged from being within 4 feet from each other and because Cystic Fibrosis is fairly rare, I rely on the internet to make far away friends feel like very close friends.

So, I was thrilled when I learned that three of the many families I stay in touch with through Facebook, blogs and CysticLife are going to benefit from Kalydeco.  In fact, these three families each have little boys about Bennett's age who are going to get to take a pill that will significantly impact the way CF affects their life.

I wanted to highlight these little boys and put a face/name to the 4% who are going to benefit.

I am esctatic that Kalydeco has the potential to change the life of our friend. Gavin...

of our friend, Brady...

 and of our friend, Bryce...
...and their families.  

These three little boys are three of only 1200 people in the nation who are going to see significant improvements to their health and future with Kayldeco.  

I consider myself incredibly lucky to get a chance to watch this happening in their lives!  I regularly chat with the brave mothers of these little boys and I am thrilled that these three mothers are getting to experience hope first hand!

No longer is this drug an amount of money given to the CF Foundation or simply text in a pharmaceutical press release.  Now this drug is an real live opportunity to change the lives of living and breathing people whom I know and whom I will continue to enjoy getting to watch grow up (even if we have to always be 4 feet or a computer screen away).  

So, today I put aside any wishes for my own child (for I know that time will come).  Today, I recognize Gavin, Brady and Bryce - for the new hope they have - and for the lives they are going to get to live.

Cheers to Gavin, Brady and Bryce!  If anybody gets to ride in the helicopter, I am so glad it's you guys!! :)


  1. Breck, Your words are exactly the feelings that I have in my heart right now, it brought me to tears to have it written and right there in front of me to read. Thank you! My daughter Josie is 19 months old now and has the F508 gene mutation, and so often I feel the same as you. I want this new drug for her so badly I can almost taste it, but I am also so happy for Becky and all the other families that get to take a step closer to a longer life with their kiddos. Thank you again, it was like you were in my head today!

  2. I love the last line of your post beautiful perspective.

  3. they are so adorable!! Can't wait to see how it affects their lives!! Yes, our time will come too!! Loving your writing Breck!


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