Saturday, March 8, 2014

All Aboard for "Cure Found"!

As many of you know, the search for a cure for Cystic Fibrosis is very close to my heart. As a mom, the hardest part is not knowing what is going on inside my son's little body until it is already causing problems. CF is a vicious, sneaky, unrelenting disease. But with your support, we CAN find a cure.

This past year has been full of many exciting milestone moments. Caleb graduated to a "big boy bed" and said goodbye to diapers and his beloved paci. His baby gibberish has turned into full paragraphs of why he should always get what he wants... and right NOW. He is growing like a weed and always full of energy, even when the adults are worn out. He still loves his trains, but now he can operate them with the precision of a pro. He is such a fun little boy, full of life and mischief. When he flashes that devilish grin and arches his eyebrow, you can't help but laugh.



We have also had some hard realities to face this year. In February of 2013, Caleb's doctor moved out of state and we began the difficult task of building trust with new doctors. Caleb started using Pulmozyme daily in March, a life-long breathing treatment we thought wouldn't begin until he was at least five. Phase 3 results of the clinical trial for Kalydeco on R117h (one of Caleb's mutations) were not as positive as we had hoped, and it looks like Caleb will not benefit from this drug after all, at least not anytime soon. Caleb's most recent illness brought with it the very real possibility of a hospital stay. Although he is doing well now, that was the the scariest experience we've had so far.

Still, there is so much to be grateful for. The CF Foundation continues to provide critical financial support to those who are searching for a cure for CF. So many life-saving breakthroughs have happened in the last handful of years - thanks in large part to donors and supporters like you. I hope you will join us in the fight against this terrible disease.

This year, Caleb's Conductors will be walking in the Atlanta Great Strides event on May 17th. Here are a few ways you can help support our team:

Donations are always appreciated, are tax-deductible, and can be made through our Great Strides team webpage. You can also spread the word to your friends and family by sharing this blog post with your entire email address book or on your Facebook page. We'd love for you to join our team and come walk with us on May 17th at the Georgia Tech Campus! Whatever you choose to do, know that you have my deepest gratitude. Not a day goes by that I don't wish, hope, dream, and yearn for a cure for CF.

Thank you for your many prayers, your love, and your support. It means more to me than mere words can say!




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