Parent Perspective – Hemispherectomy for Rasmussen’s Encephalitis

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How do they do it? How do other parents manage the many challenges after their child has epilepsy surgery?  Do you wish you had a “blueprint” of ideas and tools others have found effective?

Our guest speaker, Emily Marino (physical therapist and parent to Giulia, who had a hemispherectomy), will share her daughter’s journey and what they have found to work (and what didn’t) after hemispherectomy surgery for Rasmussen’s Encephalitis

Emily will discuss what they have done to address her needs in physical therapy, occupational therapy, speech and communication, hearing, vision, assistive technology, executive function, and social skills. Her plan has empowered Giulia in the best way possible for a successful future.

Other parents will share their experiences with different epilepsy surgeries in future Parent Perspectives.

Power Hour is for caregivers advocating for the needs of a child anywhere on the epilepsy surgery journey. Come with your questions about education, transition to adulthood, connecting to financial or medical resources, housing options, epilepsy surgery, dealing with postoperative hydrocephalus or shunt issues, or any other concern. We will have open forums where parents can learn from each other during the session and topic-specific sessions with specialists in the field. Sessions will be monitored by our Director of Patient and Family Advocacy.
  • PLEASE NOTE! YOU MUST REGISTER IN ADVANCE. After registering, you will receive a confirmation email.
  • Power Hour is only for parents or primary caregivers of children (including adult children) who have had or are considering epilepsy surgery.
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