This Is What It's Really Like To Live With Cystic Fibrosis

24-year-old Caleigh Sarah Haber would like you to know that she is a normal person. She sings Beyoncé in the shower, dotes on her dog London, and loves the Golden State Warriors. She also has cystic fibrosis, a life-threatening chronic illness that damages the digestive system and clogs the lungs with mucus.

"To me, cystic fibrosis feels like to...have a hard time to breathe every day," she shares in a new video in filmmaker Ron Parida's series, The Happiness Stories, which highlights the positivity of individuals who face immense challenges, from amputation to debilitating disease. Kayla, for her part, refuses to allow her disorder to define her. "I'm a normal person; I have a chronic illness. CF isn't who I am. I'm Caleigh," she states. "It's not just because I have a chronic illness that I can die tomorrow, because anybody can, and people just don't realize that. So many people take breathing for granted, and nobody should."

Caleigh approaches her disorder with both perspective and humor, calling her oxygen tank her "boyfriend" — "because he's always there, following me around, being a part of everything, so he needed a name," she explains. "When I got him, we were watching The Bachelor — which my mom, brother, and I watch together every Monday — and I loved Juan Pablo, so we named him JP."

Caleigh is currently on the wait-list for a double lung transplant at two centers; she has been listed for over a year. "One thing we’d like people to take away from the video, other than Caleigh's sheer positivity and emotional strength, is the power of organ donation," Parida tells us. "We think it's a very actionable thing for everyone to take part in, and tangibly make the world a better place."

View Caleigh's video below and visit her website to learn more about this irrepressible young woman; then, head to organdonor.gov to explore the option of becoming an organ donor.
Advertisement
Advertisement