Drug-resistant epilepsy is relentless. It disrupts daily life, creates uncertainty, and impacts the whole family. Seizures can happen anytime, bringing terrifying moments and constant stress.

Even after surgery, challenges often remain: medical side effects, behavior struggles, learning difficulties, and endless appointments. Parents are consumed with managing it all, and siblings often feel the impact in ways that aren’t consistently recognized.

As siblings grow up, their roles can shift. Some step into caregiving or care management, especially as parents age or pass away. These transitions bring new emotions, responsibilities, and decisions.

In this Power Hour, Emily Holl, Director of the Sibling Support Project, will lead a candid conversation with three adult siblings who grew up in families shaped by drug-resistant epilepsy and epilepsy surgery:

• An attorney whose sister had epilepsy surgery as a child
• A young adult reflecting on his brother’s hemispherectomy
• A pediatric neurologist whose brother lived with seizures and later died from SUDEP

Together, they will share stories that reflect a saying often heard in our community: “Once a sib, always a sib.” Even after loss, the sibling bond continues to shape their lives.

Topics include:

• Growing up with the unpredictability of seizures
• The emotional impact of emergencies and divided parental attention
• How parents can support their other children while navigating epilepsy’s challenges
• The evolving role of siblings in adulthood, including caregiving and long-term planning
• Honest reflections on what helped, and what they wish had been different

This video is for caregivers who want to better understand the sibling experience, as well as teen and adult siblings seeking connection and validation.

Please note: This video will include a discussion of SUDEP (Sudden Unexpected Death in Epilepsy) and epilepsy related death.