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…
Born in early October 2010 with a love for Halloween, Selena has been on the move ever since. She is labeled as non-verbal, but she’s not quiet. She can’t walk independently, but crawling and knee walking independently doesn’t slow her…
Dylan is a 16-year-old, smart, sassy, and energetic young man. He loves all things superheroes and is dedicated to keeping his friends and family safe with his superpowers. Dylan made his grand entrance into this world on New Year’s Eve…
Theo is my favorite topic of conversation. The word that comes up first whenever I talk about him is sweet. He has a gentle, calm nature and the world’s best smile. I could hug him and smother him with kisses…
