Personal Stories

Finding international support for my LGS loved one

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….


Deep Brain Stimulation (DBS) Provides Family with Seizure Relief

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…


Overcoming Overwhelming Obstacle with the LGS Foundation’s Support

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…


Our Journey to an LGS Diagnosis

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…


Our New Identity: LGS

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…


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 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…


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…


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…


Meet Olive

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…