Wednesday, December 9, 2009


It has been such a long time since I have updated this blog. We are living in TN, we moved here in August, awaiting the start of the FDA trial for VX-770. Capri has already participated in Part One of the trial and she got one dose of VX-770. We love TN and the doctors here are amazing. A quick update on fundraising. We have about 3 wks left to meet our goal of $200,000. Amazingly we might have met our goal. The Foundation is waiting for a check currently from an amazing man. A amazing women joined us in the fight for Capri and all those with CF and she reached out to her boss and he has made a large contribution to the Foundation. It blows me away the impact just one person can have on the fate of thousands of people's lives. We are still waiting to see the amount donated and the wonderful thing is that whatever he donated will be matched by an oil and gas company in TX. So currently because of the work and prayers and money of every person who has gotten involved and joined me in the fight for my child's life my goal may not only be met but blown out of the water. That is truly a miracle in this economic time. THANK YOU TO EACH AND EVERYONE WHO HAS MADE THIS MIRACLE POSSIBLE!!!


  1. Hi,

    My name is Sharon Ray and I am the assistant editor of I am contacting you today in hopes of developing a relationship with your website; we have seen your site and think your content is great. offer a free informational resource to both the general and professional public on this terrible disease.

    I hope you show some interest in building relationship, please contact me at

  2. That is so have definitely put in some hard work. I apologize for commenting so late, but thank you tremendously for the sweet comment you left on my blog. It made my day and really meant a lot. My goal when creating my blog was for two purposes: to share my faith and bring others to Christ, because in my opinion, no one can fight CF without a relationship with HIM! Purpose #2: to provide as much advice, resources, etc., for other CFers, CF parents, etc., to use as they go through this journey as well. I look forward to keeping up with your blog and will add you to my blog roll so I can be alerted when you update! I hope you met your fundraising it's been 3 weeks since this post!