Life with Half a Brain (2024) is a poignant documentary directed by Ken Kobré that gives us a peek into the lives of children with medication-resistant epilepsy and their journey to hemispherectomy surgery. The film centers on the story of “Z” (Zacchaio Thiele), a baby whose relentless seizures persisted despite multiple medications. Faced with the prospect of Z losing intellectual capacity weekly, his parents were presented with a daunting choice: proceed with a hemispherectomy—surgical removal of half of his brain—to halt the seizures, or risk continued deterioration.

The documentary also chronicles the journeys of six other children whose families grappled with similar heart-wrenching decisions. Through intimate interviews and medical insights, the film sheds light on the challenges, hopes, and resilience of these families as they navigate the complexities of such radical treatments.

This documentary was filmed in collaboration with the Pediatric Epilepsy Surgery Alliance and includes interviews with our founder and Executive Director, Monika Jones, our Director of Patient and Family Advocacy, Audrey Vernick, and our board members Dr. Sandi Lam and Kaitlyn O’Connor (who had hemispherectomy as a teen). It also includes footage from our 2022 family conference in Utah.