Mothers caring for children with epilepsy are courageous, creative, and dedicated. Woven into the stories of those who shared their thoughts with epilepsy.com was a determination to do something, oftentimes to overcome the stigma and bring about awareness. The mothers presented here include an actress, a filmmaker, an advocate, a musician, and a founder of an organization to educate others about traumatic brain injury.

All of the mothers we talked with turned their initial feelings and frustrations into a channel for education and advocacy.

In the foreword to Epilepsy on Our Terms: Stories by Children with Seizures and Their Parents (The Brainstorms Series, Oxford University Press) Jamie Lyn Bauer, star of "The Young and the Restless" and "Days of Our Lives," writes "When my son developed epilepsy, I grieved over the loss of his potential and the physical, mental, and emotional pain he had to endure. I grieved over the loss of quality time with my other children. I was overwhelmed by the responsibility of managing everything alone."

Camilla Becket is a filmmaker and author whose daughter Lydia is now 9 years of age. She said, "At first we went into denial: Lydia seemed so perfect—not only was she hitting her milestones on time or early, but she glowed with good health, was energetic and happy. Then the seizures began increasing in frequency and we went into a panic. I was in such a state of anxiety that I found it impossible to read any of the books that were out there."

"I wanted a film with quick information and I wanted to see and hear from real parents and doctors, being honest, telling you like it is. So my husband and I collected insights from experienced parents along with advice from some of the best doctors in the field. We put the essentials that we learned into a film. Our hope was to help parents and caregivers in the same situation as we were in at the time." (Childhood Epilepsy: What You Need to Know - An Interview with Camilla Becket)

Jeanne Donalty lost her son Chris at age 21 to Sudden Unexplained Death in Epilepsy (SUDEP) while he was at college. She said to us, "Can you imagine how everyone felt? Just 11 weeks before graduation, it was a tragedy that affected everyone. It was devastating for us, his sisters, and his friends. No one told us that with epilepsy there was a risk of death. And to the best of my knowledge, no one ever told Chris."

After the initial shock she recalled getting in touch with Citizens United for Research on Epilepsy (CURE) and said, "I remember my words: ‘He was 21. He loved Florida. He loved playing baseball. He had epilepsy. And he died.’"

Today as a member of CURE, she says, "Telling Chris's story has given me a platform so I am able to speak out and try to change the practice and procedure of physicians to inform patients and parents about SUDEP. I thought that Chris’s doctor was the only one who didn’t inform his patients about this. I have learned that most physicians do not discuss SUDEP with their patients." (Jeanne Donalty: A Mother's Story Losing a Child to Sudden Unexplained Death in Epilepsy)

Cynthia Folio, PhD is a musician and associate professor of music theory at Temple University. Her daughter has had seizures since she was 5 months old and today at 16 she still cannot be left alone. However, Lydia has been on the Atkins-for-seizures diet for one year and is almost seizure-free!

Dr. Folio told us, "I was at an epilepsy camp when Lydia was a preteen and I was reading The Brainstorms series. After living with a child who has had seizures all of her life, suddenly I said, ‘Wow, so this is what it is like!’"

Dr. Folio added: "My daughter could never express what seizures felt like and I often wondered: What does she feel? What does she see? She talks, but she is not verbal enough to explain what is happening. These books made such an impression on me that I decided to write a composition that expresses what it feels like to have a seizure and captures the emotions of epilepsy. The composition is in three parts: the aura, the seizure, and the post-ictal period. I decided to include art work from Dr. Schachter’s Visions: Artists Living with Epilepsy book and then added voiceovers. We recorded Lydia’s voice saying little phrases such as: ‘It feels like a roller coaster. I feel a tingling feeling in my feet. I get butterflies in my stomach. I feel confusion and shame.’ Because it is on a CD, Lydia says it makes her feel like a rock star." (The Inspiration from my Child's World An Interview with Cynthia Folio, PhD)

Marilyn Spivack is Neurotrauma Outreach Coordinator at Spaulding Rehabilitation Hospital in Boston and Co-founder of the Brain Injury Association of America. Marilyn’s daughter Deborah sustained a severe traumatic brain injury in a car accident when she was just 15 years old. Marilyn said, "She is the reason that I became the founder of the Brain Injury Association of America with help from my husband. Deborah’s life was saved at the Massachusetts General Hospital through the expertise of Dr. Paul Chapman — his skills saved my daughter, his compassion saved my sanity."

She added, "Debby is 48 today and lives in her own home, which she shares with two other young women and a 24/7 staff managed and run by the Mentor Organization. She travels. She has a very busy life. But she is quick to say, ‘Brain injury is a b…. but my life is OK.’ But she has severe epilepsy, had a vagus nerve stimulator implanted, and is under constant surveillance and care." (Marilyn Spivack Talks about Brain Injury: The Beginning of a Family Journey)

What we learned from each mother is that epilepsy never affects just one person. Families may become involved in almost constant care and concern. Despite the obstacles, the exhaustion, and the worry each mother’s story is one of resiliency and resolve to educate others and to look towards a cure.

Submitted on April 28, 2008
Edited by Steven C. Schachter, MD