Our Journey with Evan and LGS
My name is Ashlee, and I’m the proud mother of Evan—our joyful, resilient 5-year-old son who has completely reshaped our world. Evan was born with Muscle-Eye-Brain Disease, a rare genetic condition that presents many medical challenges. From abnormal brain folds and a Z-shaped brain stem to hydrocephalus and developmental delays, Evan has faced more obstacles in his short life than most of us can imagine.
Among the most difficult of these challenges is Evan’s diagnosis of Lennox-Gastaut Syndrome (LGS)—a severe form of epilepsy marked by multiple, difficult-to-control seizure types. Evan experiences tonic, atonic, myoclonic, and absence seizures, many of which strike without warning. While he is currently on three anti-seizure medications, his seizures persist—especially at night.
Like many LGS families, our nights became battlegrounds of anxiety and exhaustion. We relied on a basic monitor that only tracked Evan’s oxygen levels and heart rate—it couldn’t detect a seizure unless it escalated into a full-blown emergency. Without access to overnight nursing care, we spent countless nights waking up repeatedly to check on him, fearful we might miss a silent, life-threatening seizure.
Capturing seizure episodes for Evan’s medical team was nearly impossible. We would try to film them on our phones, but they were often too fast or unexpected to catch. We felt helpless—desperate for a solution that could bring us both peace of mind and better tools to care for Evan.
That’s when we found the LGS Foundation and applied for the Elevate Patient Assistance Program. When we learned that our application had been approved, we were overwhelmed with gratitude. Thanks to the generosity of this community, we received the SAMi-3 seizure monitoring system—a true game-changer for our family.
This device now monitors Evan throughout the night, detects and records seizures, and allows us to securely share video footage with his doctors. It’s given us a deeper sense of security, and for the first time in years, we can rest just a little easier knowing Evan is being watched over—even when we sleep.
The LGS Foundation didn’t just provide a piece of technology—they gave us hope. In a life that often feels isolating and uncertain, we’ve found connection, compassion, and support through this incredible community.
-Written and submitted by: Evan’s mom, Ashlee
Updated 5/21/25 (KK)