Tuesday, January 31, 2012

Kalydeco APPROVED!!!

I can't even begin to describe the feeling I had when I woke up this morning, got online, and read about what I have been waiting for! Kalydeco was approved by the FDA! As I read this, I couldn't help but cry tears of joy. I soon ran as fast as I could to my mothers room to shout the amazing news. The entire morning was filled with texting friends and talking with people about how excitement there was now in the CF community. Only 4% of the CF community have the mutation that this drug targets, and thats one of mine! When I first heard about Vertex having drugs in clinical trials a couple years ago, I never dreamed the day would be here already. I had heard the rumors of how healthy this pill made them feel. How much they could actually do during the day now and feel almost NORMAL. I read about how they could RUN. I remember one night about a year ago after hearing about how a fellow cyster could run, I had this crazy dream. In my dream I was on a track running and running and running; running up the bleaches and around without being crazy out of breath or coughing. I remember waking up and thinking one day I will do that, I hope I get the chance to do that. Today gave me so much more hope than I have ever had before; which let me tell you was a lot before because I have always been a glass half full type of person about drug improvement.) I am going to start trying to run so when I get Kalydeco I won't stop! I long for the, which will be in a month or two, where I actually get these "lightening" pills. This will hopefully improve my lung function by at least 10% so I can live longer and have an amazing future. Studies have even shown that it will also help me maintain and even gain weight! If it does then hopefully within this next year my feeding tube will be outta here! I simply can not wait for what God has in store for my future!

Smile on my face all day long!

For those of you who dont know what Kalydeco is here are a couple links that give a brief explanation...


  1. I was so excited when I read the news! Of course, I'm desperate to get this medicine to my son Brady, but he is only 4 years old and doesn't truly understand what it means. You were the next person I thought of. Young, beautiful, and with your whole life ahead of you. You hear that? You have a long life ahead of you!! Wish I could give you a big hug because I know what this means for your family and mine and I know you will cherish it! XOXO

    1. Thank you so much! i cant wait till your son gets to start taking it too. I have been walking on air ever since i read about it yesterday and i cant wait to start taking it!!!!!!!!

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  3. So exciting!
    Hi =) My name is Sarah and i have CF (currently in hospital). I some how came across your blog and thought i'd say hello. Keep fighting! <3

  4. I just stumbled across your blog and wanted to say congrats! I am a fellow CF/G551Der and it looks like I am going to be able to get started on Kalydeco this Thursday. I CAN'T WAIT! I keep reading stories of how amazing it has been for other people... it's getting me so excited to start! Have you started on it yet? How is it working for you?