Orkambi medical trial and HOPE

8 weeks have come and gone since Molly started the Orkambi medical trial for pediatric aged patient (the same medication from this video that changes this young woman's life).  There have been many ups and downs.   Many have asked if the sacrifices required to participate in this trail are worth it.  Our response is both resolute and affirmative.  Whatever the cost we remain grateful.  Gratitude, albeit important, is not the overwhelming sentiment that fuels our collective fire.  The sentiment that we have longed for that sustains our course is that of HOPE.  You see for so many years it was the thought of hope that propelled our fight, but now it is no longer the thought but the actual sentiment that we enjoy. 

I, unlike many fathers, look forward to the day my baby is dressed in white waiting for me me to walk her to the altar.  I pray for the day she will leave me and go off to college.  I anxiously await her asking me to travel the world, or experience one of lives many adventures.  Because with each heart breaking moment I will know that she has won.  I now HOPE for a brighter and better future for her than ever before.     

“If you can’t fly, then run

If you can’t run, then walk

If you can’t walk, then crawl

But whatever you do, you have to keep moving forward.”

Martin Luther King Jr. 

Thank you for taking the time to read and share in our fight.  A huge thanks to the Oklahoma City Cystic Fibrosis foundation for creating this video.  

Dayne R. Jensen