@darcies_story: EB is so unpredictable… Less than 12 hours after Darcie’s 1st birthday, we ended up in hospital. Through the night she was in a lot of pain and wouldn’t open her eyes. Even with pain meds, she was still so uncomfortable. There’s a chance she has a corneal abrasion — essentially a blister in the eye. If that’s the case, she may not open her eyes for a few days until it heals. It’s hard to know for sure, because we can’t see her eyes right now. On top of that, she has stridor — a blockage or narrowing of the windpipe/voice box. This isn’t new for Darcie, and she’s been on long-term medication for it, but blistering inside the airways is a major issue with Junctional EB. Because it’s internal, there’s only so much that can be done. Life with EB is never simple. Yesterday she was smiling and happy… and less than 12 hours later she’s a different baby, in so much pain. Right now she’s resting, sleeping a lot, and on more pain medication than she usually needs. We have no idea what the next few days will look like — we just want her as comfortable and happy as possible. But Darcie is a fighter. We’re hoping we’ll see her big beautiful eyes again soon. 🥰🦋 #hospital #fyp #epidermolysisbullosa #EBawareness #foryouu

Darcie’s Story🦋

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Friday 05 December 2025 18:57:59 GMT