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.

Emersyn’s Story

Maverick’s PDE Story

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.

Nikola’s Story

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.

If you read our blogs, it’s time to catch you up! 📍 Family Retreat – October 3–5, 2025 – Aurora, CO Let’s start with some exciting news: our PDE Family Retreat is happening October 3–5, 2025, in beautiful Aurora, Colorado!One of the highlights this year will be a special tour of the Coughlin Lab at the University of Colorado […]

What We’ve Been Up To! A Year In Review + Family Retreat Preview

Harrison’s Story

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.

Ava’s PDE Journey

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.

Meet Cleo: Despite a healthy start, Cleo faced feeding challenges, seizures, and open-heart surgery before being diagnosed with PDE.

Cleo’s PDE Journey

Ruby’s Story

Meet Ruby: A tough start to life led to intense NICU care and heartache before she was finally diagnosed with PDE.

Maverick’s Story

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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