Shelby jumps for joy.

I believe in miracles, I really do.

I know that I’ve been blessed with more than my share in my 47 years. I am beyond excited at the possibility of another miracle touching down in my life. Not even two weeks ago, when Shelby and I ventured to Baltimore for her regular three-month checkup at the Johns’ Hopkins Cystic Fibrosis Center, our family received incredibly good news.

Shelby, our college-bound 18-year-old, is eligible to begin taking Kalydeco, the new FDA-approved CF drug that does something no other CF drug before has done: it targets the CTFR protein (the underlying cause of CF), not just the symptoms of CF. For the six years since her diagnosis, my husband and I have operated on the knowledge that Shelby had the F508Delta mutation, the most common CF mutation. Not until I sat in that office chair, an arm’s length away from our doctor, did I realize the magnitude of his news. No, Shelby has G551D, the rare mutation that Kalydeco targets, the gene that only 4% of 30,000 CF patients have. And Shelby not only has one copy of this rare gene–she has two, something only .0004% of the CF population exhibits.

Two hours ago, our direct-mail pharmacy called to tell us that Shelby’s first 30-day supply of Kalydeco arrives tomorrow. This drug could represent the early stages of a super-sized miracle. Perhaps one day, CF truly will stand for CURE FOUND. Today, for me, it stands for CONSTANT FAITH.

This coming Sunday, May 6, our family will walk in our local Great Strides Walk to Cure Cystic Fibrosis–Megan’s Walk, we call it here locally, in remembrance of a friend and neighbor, Megan, who at 15 lost her battle with CF. If you can support the ever-hopeful search for a cure, please visit my walk page and make a donation. At the very least, keep the faith. Hope and joy are plentiful; miracles happen daily. Open our arms wide and receive them.

Be blessed–and be a blessing,

Martha, LoudounCrazyMom