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 to 2 percent of all people with epilepsy, and 3 to 4 percent of children with epilepsy. Those with LGS typically have several different seizure types, are resistant to seizure medications, and have developmental delays and/or an intellectual disability. There is also an increased risk for Sudden Unexpected Death in Epilepsy (SUDEP), which means many LGS patients die young.

While these statistics and facts are sobering, those who live with LGS have so much to teach and offer others. Julian Gaube is one such soul. At 14-years-old, Julian is mostly non-verbal, still in diapers, wears leg braces, needs maximum assistance with daily activities such as feeding and dressing, and endures daily seizures. In addition to LGS, Julian has cerebral palsy, cortical visual impairment, microcephaly, and deals with other comorbidities.

Julian was born not breathing, suffering brain damage at birth. He was diagnosed with cerebral palsy at 6 months old and never met any childhood milestones such as crawling and walking. He had his first seizure at a year old, which lasted an hour and 45 minutes. He was diagnosed with LGS at 4-years-old, when he began to have daily seizures.

Despite all his struggles, Julian is a very happy boy who is constantly smiling and giving fist bumps. His positivity and perseverance are admirable, and his smile lights up a room.

Special Thanks to Julian’s mom, Kara, for sharing their incredible journey with us.