Owen

2021 EMBRACING BRAVE Denver Recipient

Owen was born in August 2019. Our angel, our rainbow, our miracle. His life was prayed for and fought for even before he joined our family. His arrival a picture of answered prayers and God’s perfect timing. Owen began having short convulsions when he was only 8 weeks old, which warranted a panicked visit to the ER. After a myriad of tests, we were given a diagnosis of epilepsy and sent on our way with a frontline drug. We were crushed… but that was only the beginning of the story. Two weeks later at what we assumed was a routine neurology follow-up, Owen was hooked up to an emergency EEG and we quickly received a diagnosis of “Infantile Spasms (or IS)” – a rare and catastrophic form of pediatric epilepsy. Every single spasm impacts the developing brain… if not treated early and effectively, this condition has means for lifelong disability.

We started Owen on a month of steroid injections, which is a common frontline treatment for IS. When his spasms settled down, he started showing new and dangerous seizure types that often warranted a rescue medication or 911 call. Every time one seizure type would settle, a different type would take over. Relentless and intractable pediatric epilepsy was ravaging Owen’s body, destroying his eyesight, and preventing any developmental gains.

By April 2021, we had been fighting this battle for 18 months. Life felt like trial-and-error… steroid treatments, 8 different anti-epileptic drugs, a medical ketogenic diet, a variety of holistic attempts, therapies of all kinds. Each only brought temporary relief. It was time for a Hail Mary – an aggressive brain surgery. Owen received a full corpus callosotomy on April 8, 2021. The hope was that by disconnecting the left and right hemispheres of his brain, Owen would have some seizure relief and we could pinpoint the source of the chaos.

While the surgery gave us some interesting direction, it was not considered a success. Owen continues to experience spasms and tonic seizures daily, and he remains undiagnosed with no concrete answers as to why this is all happening.

Owen is a hero and it is no coincidence that his name means “young warrior”. This boy has fought harder in his short two years than many people do in a lifetime. Despite his daily seizures, developmental delays, and cortical visual impairment, Owen is the sweetest and snuggliest kid in the world and his rare smiles can light up a room. Every day with Owen is a gift from God. He has taught us how to be stronger, kinder, and braver than we ever knew possible… and he is teaching everyone around him what real love and perseverance looks like. We have a long journey ahead, but we’ll never stop fighting alongside our Owen or believing in his capabilities.- 2021

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