On this journey, you are Never Alone.
Meet Brock
It was a cold, snowy day, in Jan 2010. Brock was 3 years old when he fell backward, hit his head on the dresser, and began seizing. In the ER, the physicians believed he passed out due to his sugar…
Meet Our Families
Meet Olivia
My daughter Olivia was diagnosed with the most severe form of life-threatening epilepsy in November of 2021, Lennox-Gastaut syndrome. This was a known possibility since she experienced a severe traumatic brain injury at birth resulting in seizures that evolved into…
In Memory of Frederick Reese Fox
2/27/2020 - 8/06/2023
Frederick Reese Fox – Freddie, Frode man, Babe, Frankie Beans, Al Franken, Frazzle, Freemont, Dr. Fronkenstein – was born right at the beginning of the pandemic in 2020. Nothing would ever be the same. A beautiful, shining soul in a…
In Memory of Allison Francis
7/31/1976 - 5/08/2023
Allison was diagnosed at Johns Hopkins Kennedy Institute in 1978 at 18 months old. She had numerous seizures of every type. Through all of the difficulties, she remained sweet and playful, laughing uproariously at sounds like sneezes, coughs and hiccups….
In Memory of Daniel “Danielsaur” Lewis Woolverton
11/07/2017 - 11/30/2022
When Daniel was approximately 4 months old, we noticed that he was not meeting all of his developmental milestones. Around this same time, Daniel was hospitalized and diagnosed with Infantile Spasms. This was the first of many hospital stays to…
Meet Micah
Micah was born a healthy and happy child. Everything was fine until around one year old. I started to notice things he could do he was having a hard time with or not doing at all. We went for test…
In Memory of Rebekah Selah Anglin
2/23/1987 - 3/24/2022
Rebekah was an emergency C-section in 1987. She progressed normally until, at 22 months, she suddenly experienced a horrible grand mal! There was several feet of snow outside, so the ambulance took a while! Her older brother by two years…
Living with LGS: Andrea’s Story
Hi, I’m Alejandra, Andrea’s mother, my beautiful angel who had a normal childhood until she was seven years old. I still remember waking up and hearing the sound that my little Andrea emitted, I thought she was drowning when I…
In Loving Memory of João Miguel Martins Nunes
3/17/1995 - 7/16/2020
Miguel was so sweet. Such a lovely baby! He used to smile and run all the time! He was born without any problem, but, suddenly, the seizures started and never went away. He didn’t talk anymore and was submitted to…
In Loving Memory of Jayden Burns
9/14/2020 - 9/25/2022
Jayden was diagnosed with epilepsy at four months old. He has been through many hospital stays. Also, changing the dosages of his medicine. Which wasn’t working. In April of 2022, he was diagnosed with LGS. He was such a strong…