Maverick was born March 24, 2017, after an uneventful pregnancy (well, besides the endless heartburn…but look at all that hair!)  He was due on March 25, but the last ultrasound indicated his weight to be about 9 pounds, and his head size was off the charts. He had a normal delivery and was born at […]

Our son Nikola was born on September 23, 2014 — a very wanted and deeply loved baby after a normal, healthy pregnancy. But just five hours after his birth, our world turned upside down. Nikola had hemorrhages in his brain, stomach, and lungs. He began having convulsions that lasted for 48 hours. Those first 56 […]

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 […]

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 […]

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.

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.

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.