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 always 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 event 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 session will include a discussion of SUDEP (Sudden Unexpected Death in Epilepsy) and epilepsy related death. October 15th is SUDEP Action Day, a day of international action that shines a light on the largest cause of death in people with epilepsy. 

About our speaker:

Emily Holl is the Director of the Sibling Support Project, a social worker, author, trainer, and sibling advocate. Since 2003, she has worked in the disability field, providing workshops, training, and support for siblings, families, and individuals with disabilities. She has conducted and published research on sibling issues, facilitated future planning workshops for families, and co-facilitated Sibshops for school-age siblings of children with developmental, health, and mental health concerns.

Emily has served as a board member of the Sibling Leadership Network (SLN) and founded sibsNY, the New York chapter of SLN. She has written about her personal sibling experiences in various publications, including Thicker than Water and The Sibling Survival Guide: Indispensable Information for Adult Brothers and Sisters of People with Disabilities.

Emily holds degrees from the University of Massachusetts, Columbia University, and Hunter College (CUNY). She previously worked as a social worker in New York City and later as Director of Academic Support at St. Paul College in Minnesota, overseeing disability resources and equity initiatives. She lives in the Greater Seattle area with her husband and two young sons. As the primary family support for her brother, she deeply understands the complexities of the sibling experience and the importance of a strong support network.