Our journey with Lennox-Gastaut Syndrome (LGS) began on Thanksgiving Day in 2008, when my grandson Kameron was three years old. My son-in-law called while rushing to the emergency room and said Kameron seemed unconscious, was making strange sounds, his eyes…
Our amazing son Mason is 18, and he was diagnosed with LGS when he was 3 years old. It’s been quite a journey so far, with the euphoric highs you expect as a parent, and soul-crushing lows that you NEVER…
Our grandson Patrick is 28 years old and has lived with Lennox-Gastaut Syndrome (LGS) since he was just 4. He’s the eldest of our daughter’s four children, and for the past eight years, he has lived with us full-time. Before…
A Story of Love, Resilience, and Advocacy
My name is Matthew. I’m 36 years old, and my story begins with my beautiful brother, Thomas. Thomas was born in 1983, and just four years later, he was diagnosed with epilepsy. At the time, our family knew very little…
Charlie was born on February 25, 2011, in Lansing, Michigan—the youngest of five grandsons. From the very beginning, he was full of life. He reached milestones quickly—talking, walking, and potty training earlier than his cousins. He was healthy, vibrant, and…
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…
Zander's Story
At 14 months old Zander had open heart surgery. As a result, 2 weeks post-surgery Zander suffered cardiac arrest. Before this, he was a thriving little boy. Then on December 19th, his life changed forever. We spent 4 months in…
My daughter Amanda started having seizures when she was two years old. After many hospitalizations and failing 12 medications, she was diagnosed with LGS, and our quest to find a treatment that worked for her began. Amanda’s seizures always came…
Valerie is smart and sassy. Loving and thoughtful. She gives the best hugs (on her terms only…lol). Valerie never gives up. She loves music, movies, coloring, reading, art, theater and shopping. She has the prettiest brown doe eyes ever. Valerie…
Robbie had his first seizure at 6 months old. It was a tonic-clonic that lasted an hour. At 9 months old, he started having infantile spasms daily. We never truly got control of his epilepsy after that. The early days…
