Raising Rare - a Column by Jennifer Chamberlain

Note: This column describes the author’s own experiences with Trikafta (ivacaftor, tezacaftor, and elexacaftor). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Recently, we experienced a miracle. Or at least we thought it would become our miracle. In April,…

Dear fellow parents, After a long summer, it’s finally time to send our kids back to school. Trust me, I’m just as excited as you to have some quiet in my house. But I’m also incredibly nervous. While returning to school is a milestone for every parent, for me,…

The thought of having a critically ill child never crossed my mind until it actually happened. I’d hear or see stories about sick children fighting for their lives on television commercials and social media, but I never imagined I’d be that parent. So it was surreal when my 4-year-old daughter,…

“Is your child OK?” These perfectly well-meaning words from a stranger cut deep for me. Claire had just finished having a coughing fit in public on a recent road trip when a woman approached us. She introduced herself as a pediatric nurse and explained that she was worried about the…

I am not an athlete by any means. But I recently signed up to participate in a hiking fundraiser for the Cystic Fibrosis Foundation. Normally, I participate in a yearly walking fundraiser, but I had to choose another event this year because of my work schedule. Among the options…

I never thought a diagnosis could bring me comfort after our daughter, Claire, was diagnosed with cystic fibrosis (CF) at 3 weeks old, which shattered me. But that is exactly what happened when our son, Connor, was recently diagnosed with attention-deficit/hyperactivity disorder at the age of 6.

The release of the movie “Five Feet Apart” was being publicized during my pregnancy with our second child, Claire, who we’d just learned would potentially inherit cystic fibrosis (CF). I’d never heard of the disease until around the time of publicity blasts for the film. Suddenly, I was…

By the time I was 25, I had studied abroad three times and traveled Australia alone for eight weeks. I always had wanderlust and a level of independence that allowed for it. When our daughter Claire was born with cystic fibrosis (CF), I didn’t want to lose that part…

Before cystic fibrosis (CF) entered our lives, my social circle consisted mainly of my elementary and high school friends. I was the last one of our group to have children and the first to have a child with a disability. While I was happy to know my friends were…

“It’s a great time to be born with cystic fibrosis.” I remember hearing this sentence from the head nurse during the first clinic of our daughter, Claire. At the time, it felt like they were just words meant to comfort a new cystic fibrosis (CF) mom. Maybe I was…