Personal Stories

Living with LGS: Julian’s Story

Lennox-Gastaut Syndrome (LGS) is a rare and severe epilepsy disorder that begins in early childhood and affects “approximately 48,000 children and adults in the United States” and “1 million worldwide,” according to the LGS Foundation. This constitutes for only 1…


Josie’s Story

Every mother will say their child is special. But my sweet Josie truly is. She is the definition of a warrior.

My name is Zoe Rabun and I am the mother to our beautiful daughter, Josie Rabun (3). We first noticed unusual behavior with Josie at the age of 9 months. She would wake up in her sleep and have these…



Eli was born in the summer of 2003 at 34 ½ weeks old. He spent 7 days in the NICU due to a ventricular septal wall defect. By 3 months of age, it was evident that he was not meeting…


Two Peas in a Pod

A Sister's Special Bond

My sister, Robyn, and I are 4 1/2 years apart. We are like any other sisters…we share laughs, tears, and yes, we even argue! What sets us apart is our special bond. From the moment I saw my sister in…


A Sister’s Love

Songs Inspired by her Brother Help Raise Awareness of LGS 

On November 1, local artists and LGS community members joined the LGS Foundation in Santa Monica, California to help raise awareness and funds for Lennox-Gastaut Syndrome. Meet the Artist: Christina Apostolopulos Hi, my name is Christina and my younger brother…


Cash’s LGS Journey

Celebrating 100 Days of Seizure Freedom

Cash is the youngest of our three boys. He is the light of our lives and here to teach lessons to all of us.  Cash started having seizures when he was 3 weeks old. These were easily controlled with medications….


Fighting for a Cure for LGS

Savannah (age 28) & Tracy's Story

According to my records, I’ve witnessed more than 40,000 seizures—a remarkable number, even for a medical professional. Still, I’m not a medical doctor. I’m a mom. I remember the first seizure vividly. I awoke to the sound of choking coming…


Brittany and Amaree

Single mother to Amaree (age 11), diagnosed with LGS at age three.

Having big hopes and dreams for Amaree, Brittany grieved for the things that her daughter would not get to experience. Then one day Brittany decided to stop wasting time focusing on what Amaree could not do, and decided that she…


Golf-A-Thon to Support the LGS Foundation

Support me as I attempt to hit 1,101 golf balls for LGS Awareness Day (Nov 1) to honor my son, John!

Donate now to honor John!   Thank you so much for showing interest in my efforts to raise funds and awareness for Lennox-Gastaux Syndrome (LGS), a rare form of epilepsy that impacts my son, John. John had his first seizure…


Sibling Spotlight

Addyson (age 11)

Hi my name is Addyson Gruber. I am 11 years old and I live in Cincinnati Ohio with my brother Braxtin, my mom Katie and my dad Mark, and Braxtin’s service dog, Dawson. I am going into the 6th grade…