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Tag Archives: Filamin A
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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