New drug has been a miracle for a man with Cystic Fibrosis

ST. CHARLES COUNTY, MO (KTVI) - This month the Food and Drug Administration approved a new drug that could give thousands of Cystic Fibrosis patient’s new hope.  It’s called Orkambi and for the lucky few who have been taking it in a drug trial for the past year and a half it’s nothing short of amazing.

Twenty-two-year-old Daniel Seddon is one of those lucky few and has been taking the drug for about a year and a half and says he’s seen steady improvement in his symptoms.   CF is caused by a genetic defect that creates a buildup of sticky mucus in the lungs and digestive system.  For about 8, 500 of the 30,000 Americans who have CF, this drug is designed to actually treat the cause of the disease rather than the symptoms.  Though it does treat the most common CF defect it’s not yet approved for patients younger than 12.

Seddon says the improvement since he’s been on the drug is dramatic.  However, the cost can be as crippling as the disease.  Right now, Orkambi costs around $259,000 a year if insurance doesn’t pay.  Seddon says he knows firsthand what this drug means and how many people out there could really benefit from it.  His parent’s hope that insurance companies will come through and help ease some of the burden for CF patients.

Christopher's Fighters clad in camo

Christopher's Fighters clad in camo walked with us in our Battle to Breathe! We did it again...Team Breathe & Believe earned the Top Strider Award for 2015! Our deepest and sincerest thanks go out to all of you who took time from your busy lives to walk with us, be with us, fight with us (and tug-of-war with us!). You give us HOPE and STREGNTH to continue this fight everyday for Christopher. 


Maria, Ruben, Frankie, Guichi, Albert, Thomas, Luisa, Ruben Sr., Anthony, Zita, Olivia, GianCarlo, Norma, Antonio, Josephine, and of course...Christopher.