On this journey, you are Never Alone.
Olivia's LGS Journey
Our warrior Olivia is 21 years old. Olivia started experiencing seizures just before her second birthday. After over a decade of uncontrolled seizures, we needed help and decided it was time for another opinion. Olivia’s new doctor ordered a complete…
07/17/1997 - 05/11/2024
Megan was lovingly known as “doubly rare”. She lived with the rare epilepsy syndrome Lennox-Gastaut Syndrome, secondary to her rare genetic anomaly, PURA Syndrome. Megan had the sweetest soul, her smile and soft presence impacting all who knew her. She…
Peter's LGS Journey
After a traumatic birth, Peter seemed super healthy. At 11 months while driving I looked in my rearview mirror and caught a glimpse in his baby mirror of what looked like an eye roll up to the left. I thought…
Andrew's LGS Journey
Andrew is our first child. I always point that out because I was in such a different place then. A place where I did not question, I did not really think about what happens when a baby is born with…
9/10/1989 - 12/26/2023
Jille was a beautiful red-haired green-eyed baby girl. She was diagnosed with infantile spasms after having major brain surgery to remove an encapsulated cyst. The seizures did not respond to the medications available at that time. Eventually, she was diagnosed…
3/07/2005 - 1/04/2022
Matthew Jason Parham was born on March 7, 2005. Matthew (also known as Matt, Matty, and Bubba), came into this world like most babies, with strong lungs, tiny fingers and toes, and nothing but wonder and curiosity for the world…
5/9/1976 - 11/19/2017
On May 9, 1976, my brother Mark was born, it was Mother’s Day that year. Being an adopted child at that time, it wasn’t until about a week later that my parents knew of his birth and that he would…
4/22/1974 - 4/26/2022
Weeks beyond his expected due date, our amazing son Tad was born and together as a young family we took our first steps on a remarkable journey, a life most people could not imagine. A path of lifelong education of…
1/29/1993 - 7/13/2018
Joshua was diagnosed at 9 months with LGS he had seizures daily and other medical issues. Joshua was a joyful child he loved music, being outside, and enjoyed being with mommy and daddy. He was in the bell choir for…
Emma's LGS Journey
Emma was a few weeks shy of her 17th birthday when she had her first seizure. It all started with 3 tonic-clonic seizures, and by the end of that week, she was having a myriad of seizure types. Emma suffers…
