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…
Personal Stories
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…
Our Little Ironman
Charles (age 10)
Ironman Dad Raising Funds to provide Crucial Medical Equipment to Kids and Adults with LGS Charles will be competing in an Ironman competition to raise funds and awareness for the LGS Foundation’s Elevate Patient Assistance Program to help individuals like…
Seizures and Study: One Mother’s Journey to Cure Lennox-Gastaut Syndrome
How Tracy Dixon-Salazar, PhD, the executive director of the LGS Foundation, went from a new mother to a neuroscientist, and her decades-long quest to improve the lives of patients like her daughter, Savannah.
Many who make the decision to enter the medical science field are often driven by a desire to help others. Physicians take the Hippocratic Oath and swear to treat the ill and do no harm, and researchers are, many times,…
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
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…