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…
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…
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…
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….
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…
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…
