On this journey, you are Never Alone.
Nyla's Story
While in utero, Nyla had a fetal ovarian cyst that grew to almost 2 inches throughout the pregnancy. The solemn and uncertain look on the doctor’s face when he saw it made my heart sink and I was overcome with…
William (age 10)
My name is William and I am 10 years old. I am in the 5th grade and enjoy school. I like video games, drawing, and geography. I live in Florida with my Dad Craig, Mom Kayleigh, Brother Dylan, and two…
Ayaz was diagnosed with LGS when he was 17 months old, our lives turned upside down knowing he would never reach his milestones. We tried numerous medications and fortunately were able to find some relief with holistic. Then after three…
Meet Dominic
My name is Jackie and I am the proud mother of an LGS warrior, Dominic, who is 11 years old. Dominic loves swimming, Legos, Superheroes, playing soccer, and Minecraft. Dominic experienced his first seizure when he was 3 years old….
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…
