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 was born and everything was perfect, until it wasn’t. The doctors called Harrison their “healthy baby,” but 48 hours after being discharged, we found ourselves driving to the ER. Harrison started tensing up and turning red. We believed this to be gas, but it didn’t stop. We tried various gas treatments, until a drop […]

Ava’s PDE Journey

My pregnancy with Ava was uneventful, a pleasant experience that led to her planned cesarean delivery at 37 weeks. Ava entered the world weighing 7 pounds and measuring 20.5 inches, letting out a loud cry as she took her first breath. However, the joy of her arrival quickly turned to concern when, just minutes later, […]

Meet Cleo: Despite a healthy start, Cleo faced feeding challenges, seizures, and open-heart surgery before being diagnosed with PDE. Today, she’s a thriving, social 4.5-year-old, proving her resilience every day. Read her incredible journey of strength and hope.

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. Today, she is unstoppable, hitting milestones, making friends, and proving every day how strong she truly is.

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.

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.

Finley’s Story

Jack’s Story Part 1, The long and painful road to diagnosis

Meet Jack: After months of misdiagnoses and intractable seizures, Jack was finally diagnosed with Pyridoxine Dependent Epilepsy. Read about his challenging early journey and how he’s overcoming the odds every day.

Summary of Dietary Guidelines for PDE 2024

Understanding Pyridoxine-Dependent Epilepsy and Dietary Management: A Guide for Families.

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