On this journey, you are Never Alone.
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…
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…
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…
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…
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…
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…
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…
Our little unicorn
I’m a mom of four and my sweet Olive is our rainbow baby and our little LGS warrior, who is now four years old. She was a healthy newborn who underwent cardiac arrest at three months old and had anoxic…
