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Tag Archives: PVNH
Ella’s Story 2022 Update
I’ve got a teenager! My daughter Ella Dupont Bedassie was born full-term at 39 weeks on August 7, 2008. Although she’d be slow to grow in-utero, Ella was born naturally and by all appearances healthy at 5 lbs, 6 oz. … Continue reading →
Posted in Stories
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Tagged Angel, Filamin A, FLNA, Interstial lung disease, PVNH, X-Linked PVNH
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Everlee’s Story
At 2 days old, we had no idea that a CT would change her life forever. Continue reading →
Posted in Stories
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Tagged cortical malformation, Everlee's Story, Filamin A, FLNA, Lung disease, multisystem, PVNH, X-Linked PVNH
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Sage’s Story
The following month was a blur of doctor visits, trying a few different medication options, but after she was still having multiple seizures a day, and one day they just felt different to me, we were back in the ER and ended up being admitted overnight for observation because she was started on phenobarbital (can cause decreased breathing and heart rate, so they needed to make sure she coped with it ok). Later that same week she had an MRI. Continue reading →
Posted in Stories, Word PVNH Awareness Day
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Tagged cortical malformation, PVNH, Sage's story, Sage's story 2022, Stories
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Harley’s Story
Ever since just before Harley turned one, I knew in the bottom of my heart there was something wrong. Continue reading →
Posted in Stories
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Tagged Cortical malformations, GMH, Hartley's Story, PVNH
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