It's been a whirlwind year since my son was born and diagnosed with cystic fibrosis. Despite the surgeries, hospital stays, and challenges of living with the disease every day, I'm thankful for the people who helped pave the way.
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Because my daughter's bowel perforated when she was a newborn, she needed to have surgery to temporarily reroute her stool so that it was collected through her abdomen into an ostomy bag. Those grueling days of ostomy care -- sometimes as often as every hour day and night -- were some of the darkest days of our cystic fibrosis journey.
I am anxiously awaiting the U.S. Food and Drug Administration's approval of Trikafta for children with cystic fibrosis ages 6 to 11. To prepare, I'm doing everything I can to ensure my 11-year-old son can take advantage of the medication as soon as it is approved.
Here's a snapshot of six works we're spotlighting from members of the CF community. Whether they shared their story through writing or through song, their work has been shaped by their experiences of living with CF.
As Evan's mom, I have to constantly decide where to invest my time, especially when it comes to providing feedback. So, when offered the chance to turn my survey fatigue into something that would actually make a difference and be less of a hassle to do, I jumped at it.