When You’re Not Alone Anymore: Finding Strength Through Epilepsy Support, Stories, and Foundations
Nothing prepares you for the moment epilepsy enters your family’s life.
It may arrive quietly, disguised as a strange moment you can’t explain, or loudly, in a blur of fear, hospital lights, and questions that don’t have immediate answers. Either way, once it’s there, everything changes. You become a parent who is always watching, always learning, always carrying a mix of love, worry, strength, and exhaustion that few truly understand.
This is why epilepsy support groups, books, and foundations matter so deeply. They don’t just offer information — they offer connection, validation, and hope.
🧡 Support Groups That Meet You Where You Are
Whether you’re newly diagnosed or have been walking this path for years, connecting with other families can feel like a lifeline.
The Epilepsy Foundation offers parents and family networks across the United States — both in-person and virtual — where caregivers share experiences and encouragement.
Empowering Epilepsy Support Groups provide online sessions specifically for parents, kids, teens, and families led by specialists and other caregivers.
Local chapters of epilepsy foundations often host support circles, discussion groups, and education sessions tailored to caregivers.
Connection can be as simple as a twice-a-month Zoom where you feel heard, or an in-person circle where you can cry, laugh, and say, “I get it.”
📚 Books That Hold Your Hand When Words Fail
Books can be comforting mirrors and windows — showing you aren’t alone while giving perspective, knowledge, and sometimes even solace.
Here are meaningful books that parents and families have found helpful:
✨ Personal Stories & Memoirs
She Danced with Lightning: My Daughter’s Struggle with Epilepsy and Her Boundless Will to Live by Marc Palmieri — A deeply moving memoir of a father and daughter’s journey through severe epilepsy, seizures, and the courage it takes to raise a child who refuses to be defined by her condition.
The Spirit Catches You and You Fall Down by Anne Fadiman — While broader in scope, this powerful story explores epilepsy through the life of a child with Lennox-Gastaut Syndrome and the cultural challenges her family faces.
Books can be comforting mirrors and windows — showing you aren’t alone while giving perspective, knowledge, and sometimes even solace.
Deeply Human & Insightful Reads
The Spirit Catches You and You Fall Down by Anne Fadiman — a powerful narrative about a child with epilepsy and the cultures that shaped her care and her family’s journey.
Epilepsy on Our Terms: Stories by Children with Seizures and Their Parents — firsthand accounts that help you understand the emotional experience from both child and parent perspectives.
Living Well with Epilepsy and Other Seizure Disorders — practical guidance and tips for families and individuals navigating everyday life with seizures.
Taking Control of Your Seizures: Workbook (Treatments That Work) — an interactive book that helps families track patterns, learn triggers, and approach seizure management with confidence.
📘 Informative & Supportive Reads
The Epilepsy Book: A Companion for Patients by Thalia Valeta — A clear and insightful guide for understanding not only the medical side of seizures but also how to navigate treatment decisions, coping strategies, and communicating with care teams.
Epilepsy and Seizures (Hesperian Health Guides) — A practical resource that explains seizure types, first-aid guidance, daily living support, and how to talk with children about epilepsy in accessible language.
Epilepsy in Children What every Parent need to know - By Orrin Devinsky, MD with Erin Conway, MS, RN, CPNP and Courtney Schnabel Glick, MS, RD, CDN - For the parent of a child with Epilepsy, an easy-to-read guide to understanding and managing the disorder while helping your child achieve and maintain a high quality of life.
📖 Stories for Kids & Families
I Spark Like Lightning by Jenna Elyse Johnson (illustrated by Sue Teodoro) — From a child’s point of view, this book gently explains epilepsy and seizures as part of life, helping younger readers understand and empathize.
Zeeba and the Seizure by Michaela Barnes- Zeeba Zera planned on having a regular school day but began feeling unwell. Something unusual and scary happens, Its a story that encourages children to embrace empathy, friendship, and courage.
Taking Seizure Disorders to School - A story about Epilepsy by Kim Gosselin Illstrated by Moss Freedman - This book in designed to be read aloud in the classroom.
Books can be a refuge when your heart feels heavy and a companion when you are ready to learn, reflect, and grow.
Books for Younger Readers & Families
If you want a gentle way to introduce epilepsy to siblings or younger children, consider titles like:
The Great Katie Kate Explains Epilepsy — a child-friendly story that teaches about seizures in an encouraging way.
Sometimes I Get the Wiggles — Be an Epilepsy Seizure Hero! — shows how classmates and friends can learn to support each other.
Let’s Learn with Teddy about Epilepsy — a reassuring picture book that explains doctor visits and what a diagnosis means.
Books can be a refuge when your heart feels heavy and a companion when you are ready to learn, reflect, and grow.
💜 Foundations That Turn Fear Into Action
Foundations do more than fund research — they build community, provide education, advocate for families, and create awareness that touches classrooms, clinics, and policymakers.
Names That Make a Difference
Epilepsy Foundation — The largest U.S. advocacy and support nonprofit connecting families with support groups, helplines, and community programs.
CURE Epilepsy (Citizens United for Research in Epilepsy) — Focuses on accelerating research toward better treatments and a cure.
Dravet Syndrome Foundation — Supports families navigating Dravet syndrome and related epilepsies with education, community events, and research funding.
These organizations often offer:
✔ National support group directories
✔ Educational materials for teachers and caregivers
✔ Community events that build connection and belonging
Each foundation underscores this truth: you are not alone in this journey.
🌱 To the Parents Reading This
If you are new to this journey, know this: it’s okay to grieve the life you imagined. It’s okay to feel strong one day and fragile the next. You are not failing because you’re tired — you are parenting through something enormously challenging with love and courage.
Reach out. Join the group. Read the book. Lean on the foundation.
And one day — perhaps sooner than you think — you may find yourself saying to another parent,
“I’ve been there — and you’re going to be okay.”
💜
