@darcies_story: Today was meant to be a day in the life of Darcie, as we had a fun day planned! However, she’d had a bad night and has been very off today. She didn’t want to feed until lunch time, so we’ve been playing catch up on her milk intake. We even had to try syringe her some milk this morning just to make sure she’d had something. It’s always hard when Darcie doesn’t feel herself, as we don’t know if it’s EB related or if it’s just something simple like teething. She can’t tell you whats wrong so you’re always trying to guess. EB always makes you question yourself. The last thing we want is to miss something serious like an infection. EB just never stops. Darcie’s got a home visit from Great Ormond Street tomorrow, just to catch up on how she’s doing and gives us a chance to talk with her team and see if there’s anything we can do or change, to benefit Darcie🦋🤍 #EBawareness #fyp #foryoupage #babytok

Darcie’s Story🦋

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Sunday 17 May 2026 16:24:47 GMT