Personal Stories

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…

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Our Little Ironman

Charles (age 10)

Life throws us curveballs. And in the fall of 2012, my wife and I got thrown a big one. At only 18 months old, Little Charles Wagner was diagnosed with Lennox-Gastaut Syndrome (LGS), a rare and severe epilepsy disorder characterized…

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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…

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Sibling Spotlight

Bennett (age 6)

Hi, my name is Bennett. I am six years old and in the 1st grade. I live in Leesburg, Va. I like to play soccer, build legos, build houses out of cardboard boxes, and play with my family and friends….

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Sibling Spotlight

Tenley (age 10)

Hi, my name is Tenley. I am ten years old and in the 5th grade. I live in Leesburg, Va with my parents Carl, and Jeannie, my two brothers Bennett and Jackson, and our two dogs Hoop de Doo and…

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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…

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Sue and Tony McCain

Parents to 23-year old Matthew, diagnosed with LGS at age seven.

The LGS journey is tough. Many families struggle with isolation, anxiety, and fear for the future. Sue and Tony explain that although their path has not been an easy one, they are grateful for each and every day with their…

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Tayla and Brian

Adopted mother to 16-year old Brian.

After nine years of teaching special education, Tayla decides it’s time for a change and hands in her resignation. The next day she meets her adoptive son, Brian. “ Brian was this frail, ornery, sickly little boy, and he started…

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