Personal Stories

Meet Emma

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…

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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…

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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…

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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…

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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…

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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…

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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…

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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,…

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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…

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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…

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