In the last 4 years, Melissa Rich, a 28-year-old new mom with cystic fibrosis, got married, had a healthy baby and is living the life she never dreamed possible. She attributes a big part of it to the new drug Kalydeco, which she has taken since 2012. “Now I don’t worry about a decline in […]
Marcia Miller appreciates the simple things in life: baking lemon blueberry bread, tending to her fairy garden, playing the piano with her daughter, watching her grandsons play soccer, and snuggling up with her beloved toy poodle Mickey. At age 64 and with cystic fibrosis, Marcia knows she has defied the odds and shouldn’t even be […]
A recently approved cystic fibrosis drug has been garnering headlines. The drug, called Orkambi and manufactured by Vertex Pharmaceuticals, treats the underlying cause of CF and could potentially help half of the entire CF population.
My daughter Autumn had been a “sick baby” from birth. We received diagnoses from asthma (which she does still have) to,”She is just a sick baby.” For four long years this is what we heard infection after infection, hospital stay after hospital stay, antibiotic after antibiotic. But I knew something was something more than asthma or that […]
My son Eddie was treated at Akron Children’s Hospital for 13 years with cystic fibrosis. All the people involved in his treatment over the years were wonderful. With his many visits to the CF clinic and his stays on 6200 everyone showed us how much they cared. They became our second family.