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Our blog is a warm and welcoming space where families touched by PDE can freely share their unique journeys, experiences, and triumphs, believing that every story holds the power to inspire, educate, and unite.
Real people, Real stories
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Emersyn’s story follows his family from newborn seizures and an uncertain prognosis to a PDE diagnosis, life-changing B6 treatment, and finally bringing their baby home.
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Maverick’s story follows his family from unexplained seizures at just six days old to discovering PDE, finding the right treatment, and watching him grow into a creative, thriving eight-year-old.
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Nikola’s story shares his journey from severe complications and seizures hours after birth to a PDE diagnosis and the ongoing treatment, care, and determination that help him keep moving forward.
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Harrison’s story follows his family from a terrifying newborn hospitalization and unexpected PDE diagnosis to finding support, adapting to treatment, and watching him grow stronger every day.
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Ava’s story follows her family from frightening newborn seizures and a rare PDE diagnosis to finding the right treatment and watching her grow into a thriving, seizure-free child.
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Meet Cleo: Despite a healthy start, Cleo faced feeding challenges, seizures, and open-heart surgery before being diagnosed with PDE.
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Meet Ruby: A tough start to life led to intense NICU care and heartache before she was finally diagnosed with PDE.
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Meet Maverick: Diagnosed with Pyridoxine Dependent Epilepsy as a newborn. Read about his journey from life-threatening seizures to a happy, thriving 7-year-old.
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Meet Finley: Born via C-section and diagnosed with Pyridoxine Dependent Epilepsy after a series of life-threatening seizures. Read about her journey from those terrifying early days to a thriving, seizure-free life.
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