@ranelittle: Halo came into this world on December 26, 2023, and from the very beginning, she showed us that her story was going to be different. She was eventually diagnosed with CTBP1-related disorder, an incredibly rare genetic condition with only a small number of documented cases worldwide. Her diagnosis helped explain some of the challenges we had been facing, but it didn’t make the road ahead any easier. Halo lives with global developmental delays, hypotonia, dysphagia, and failure to thrive. She has a G-tube and requires a level of care that most people never have to think about. There are therapies, specialists, appointments, equipment, hospital stays, medications, and countless nights spent watching her breathe. And lately, our journey has been especially difficult. We have spent days in the hospital fighting pneumonia and respiratory complications. I’ve watched my daughter’s oxygen drop to levels that terrified me. I’ve watched rapid response teams rush in to stabilize her. I’ve sat beside her in the ICU, wondering what the next hour would bring. And somehow, through all of it, Halo keeps fighting. #viral #fyp #foryoupage #daughter #support

Rane Little 🧿🪩🍃✨

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Tuesday 11 August 2026 00:16:20 GMT