Saturday, February 26, 2011

A Miracle and a Latte Please

This is my first blog entry.  It terrifies me, because getting personal about CF makes me want to barf.  The people reading this first entry likely know me, so I'm going to get right into it.  If you have spent more than 5 minutes with me, or read my posts on Facebook, you know my 3 1/2 yr. old son Brady was diagnosed with cystic fibrosis just after birth.  For me (completely type A personality) to feel so out of control of this disease has been emotionally devastating for me.  For about 9 months, I just didn't talk about it.  Obviously I've gotten over that!  I remember when I read about the first stage trials of VX-770.  I was already excited because it was a drug to treat the root cause of CF rather than the myriad of symptoms.  This drug is designed to treat a very small percentage of people with CF--those who carry the G551D mutation.  I had just learned Brady's mutations recently and had to pull out some paperwork to find them. I remembered it was a jumble of letters and numbers. Could he possibly be one of the 4% of the CF population that VX-770 might work for? YES!! Brady has the G551D and DF508 mutations.  When the phase II trials were published, I just about lost it!  I couldn't stop researching, calling, trying to find participants in the study.  A complete obsession.  How could it not be?  I am watching my son's own personal cure making its way to him.  In the meantime, he is staying amazingly healthy (fingers crossed!).  Phase III results were released on Feb. 23rd.  We knew the results were going to be published in "the first quarter of 2011" so we have been very anxious the last few weeks.  I turned on my computer and saw it immediately on Facebook.  I sputtered something urgent out to Brock and he hurried over.  "Click on it!!," he nudged me.  I had frozen, staring at the headline. I don't think I took a breath until I finished reading.  You know when you have one of those days that you immediately know you will never forget?  Brock and I both had tears streaming down our faces.  We tried to stay sort of quiet, so we wouldn't wake up Brady, but it was pretty intense.  I swear I felt a shift in the Universe.  Like, maybe it was the beginning of the end of this CF nightmare.  Then Brock went to work and I have been trying to function ever since.  I sort of swing between celebrating my ass off to being exhausted and super emotional.  No wonder Brock is ill!  It is just so surreal.  "Hey, how are you today?"  "Oh fine.  The specific strain of my son's rare genetic disease is getting fixed with a new medication soon and could you make my latte sugar-free please?" I thought that maybe if I typed some of these things out, that they would quit swimming around so much in my head.  How am I supposed to figure out what to make for dinner with this going on?! I LOVE that the rest of the world is finally starting to get excited about it!  I was getting really sick of getting that, "oh you poor delusional mommy" look when I talked about it before!  I have heard an estimate of 18 months until VX-770 hits the market.  I realize there are numerous variables, but if all goes well with the FDA, Brady could have this treatment the summer he turns 5, just before he goes to Kindergarten.  Are you starting to believe in my luck yet?  I'm not going to take a second of this for granted...


  1. Becky-

    I am so happy for you and your family. What an enormous blessing this medication will be for all of you. You have done an amazing job dealing with all of this and are absolutely the best mother that Brady could ever have. I love you!


  2. Im soo excited for you! This medication wont help Bryson, but I know in my heart that they will find the cure for all mutations!!