@ariel.kapp: One of the hardest things about sharing Piper's CF journey so openly is knowing that there are probably brand new CF parents watching her and wondering, "Is this what our life is going to look like?" I really, really need you to know that the answer is no. This is what Piper's CF looks like. I need that reminder sometimes, too. I see other kids with CF on social media who aren't always in the hospital, who don't seem to be sick as often, and I compare. I wonder why it feels like we're always back here. That's the thing about CF. It's probably something we all need to be reminded of sometimes. We all want to compare. We look at someone doing better and wonder why that isn't us or we look at someone having a harder time and wonder if that's what's coming. Neither one tells us what our own story is going to look like. Piper's CF journey has been tough. That doesn't mean your child's will be hard in the same ways. CF can look completely different from one person to the next. Even two kids with the same mutations can have very different experiences. So I'm going to keep sharing the hard stuff because this is our real life. But I never, ever want Piper's story to make you afraid of yours. She is one little girl with cystic fibrosis. She is not your child's future. #unitedstates #newyork #unitedkingdom #RareDisease

Ariel Kapp

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Monday 17 August 2026 23:40:50 GMT