Kate Raising Her Voice for Her Daughter with Epilepsy by Writing a Book and Creating Brave Bears
By Amber Kaiser
Kate and I met on LinkedIn recently and she reached out to me about her new book, Char Bear Keeps Dancing, and complimentary stuffed animal, Brave Bear, which she created for families whose babies have been diagnosed with epilepsy. She became an advocate for pediatric epilepsy after her daughter, Charlotte, was diagnosed with a rare form of epilepsy, infantile spasms, which started in 2022 about two years after she was born. With both her and her husband’s determination to learn more about epilepsy and make the best possible choices for her daughter’s health (and a lot of luck), Charlotte has now been seizure free since 2023.
Kate continues to share her experiences to help other families. Like a lot of us who start researching the epilepsy field, she noticed there is a lot of disconnect and lack of easily accessible resources available. She feels that the field still has a lot of room for growth and advancement and I completely agree with her. We really connected on the important need for more investment in the field to help technology continue to advance epilepsy healthcare. Even with the progress that has been made, I think there are a lot of reasons the epilepsy field is still further behind than other neurological disorders like autism, Alzheimer’s and Parkinson’s disease—naturally, the difficulty of people feeling comfortable to talk about epilepsy and raise awareness because of the epilepsy stigma, the ability and safety for people who have been devastated living with epilepsy to raise their own voice if they can, and the real financial struggles for a lot of people and families to be able to contribute to the field even though we have the passion for progress—I think these are clear factors that have made it more difficult to shed light on epilepsy in general, and in turn, impact financial support. Kate is striving to keep raising awareness and already working in the medical field has helped her quickly gain traction with her book and bears. She is really striving to help make a difference for families whose lives have been forever impacted by pediatric seizures and epilepsy.
Epilepsy quickly became a part of our lives
Charlotte’s my first baby and the first grandchild on both my husband’s and my side. I was pregnant with my second when she was diagnosed and it was devastating and really confusing—infantile spasms is a really rare condition. I quickly learned how misunderstood epilepsy is and the huge need for research funding. I also noticed when I talk about epilepsy it was difficult and uncomfortable because people tend to shy away when they don’t understand something.
This was my first real experience with hardship, the “disability and inclusion concept” started making a lot more sense to me. She was diagnosed with epilepsy in her first year and the school—our relationship with them and their relationship with her—took time and they eventually became more comfortable with her.
Infantile spasms epilepsy
A year ago, I didn’t realize it because it was so devastating, but Charlotte is actually a mild case; whereas, most kids that are diagnosed with infantile spasms have a very severe condition. I’m also more passionate about this type of epilepsy because it’s less common. Char Bear Keeps Dancing is geared toward children 0-3 years old and helps people understand that while someone may have epilepsy, they should still be able to be included in things and everyone has brain waves that help you think, eat, talk. Charlotte's brain, really all our brains, do it a little differently because everyone’s brain is different.
When getting control was proving hard, Charlotte was in pre-surgical evaluation. With the evaluation, we are considering brain surgery options.
Adapting to her daughter living with epilepsy
I didn’t adapt well. The experience was crushing. Everything that you envisioned and expected as a parent became really difficult. Hard times, sleepless nights. Medical complexity. One minute you think you have a healthy child and the next minute you don’t. There is no handbook for that. Having to be your child’s advocate and learning how to navigate it all was really difficult. There was a lot of confusion and fear and it was the darkest time of our lives and I wouldn’t wish the experience on anyone. At the same time, I would say pouring myself into the Char Bear Keeps Dancing book was therapeutic and I credit her neurologist for pushing me. It wasn’t something I wanted to pursue as an author, and it was tough with already having a full-time job. I also had to learn how to put myself out there and struggled navigating my new life. No one has a crystal ball, and I had no idea what was coming with epilepsy.
We are in a much better place than we ever expected to be now. Charlotte is seizure free today, and hopefully, it will stay that way but epilepsy doesn’t make sense and we are trying to just enjoy every day with her as a healthy and happy normal toddler. I think something that isn’t really talked about is the fear that seizures will come back and the daily unrest, you aren’t sure if it’s coming or not. When your child has gone through something really traumatic you find out there are some stories that children never relapse and then there are other stories where they end up developing many different kinds of epilepsy and have a much different road in life. You never know if it will come back. And parents of the kids don’t feel like they have support because there is no place for that. I feel like the epilepsy world is disjointed and it’s overwhelming to understand what our resources are.
I recently got involved with several amazing advocacy groups and with Char Bear Keeps Dancing one of the goals is to have all the books cover the different types of epilepsy and organizations included. Different things work for different people and that’s okay. All the organizations are different—you can’t do everything. Some focus on research, others resources, and everyone can get some kind of support in different areas.
Writing Char Bear Keeps Dancing and creating Brave Bears
Throughout the epilepsy journey with Charlotte, I wrote Char Bear Keeps Dancing geared to ages 0+ for easy-to-understand terminology that wasn't scary to kids and it’s also turning out to be very appreciated by adults. The book originally came out in September 2023 and it happened to coincide with a time where Charlotte was doing really well and cognitively understanding and she started resisting EEG testing in different ways than when she didn’t understand. I tried to find any EEG stuffed animals and even implored many creators on Etsy to make me an EEG cap, but no one understood what I was talking about. So, when I got offered to create a stuffed animal character for my book, I decided we needed an EEG bear more than a Char Bear. It was really going to be just for her, and then while we had poured our heart and soul into the book, after posting about the bear online, a flood of people connected with me almost overnight—a lot of families whose kids had any kind of pediatric epilepsy and even many adults who had epilepsy liked it as well. They say they wished they had it in their childhood! I worked with a manufacturer and explained to them what I wanted and now I’m even working on a 2.0 version. It’s only been 4 months and we are now in 20 hospitals in the US and a few in Canada and the UK. Ideally, I would like to be able to donate bears in the future also. Charlotte is happy to see other people with the bears or getting EEGs — she says “they get their head checked like me!”
Advice for other families whose baby is diagnosed with pediatric epilepsy
If you’d asked me a year ago, I would have had a very different answer—we were in a different place of not knowing anything—I hadn’t understood the different experiences that others have had. Now, I don’t have any advice for other parents, just lots of love. I don’t pretend to know everything. I’ve written this book and want to change the world, the way we talk about and view epilepsy.
We are all doing our best and different things work for different people. I wish someone had advice that worked for everyone and I would buy it. I thought therapy would be magic, but that’s not necessarily true and maybe more or less therapy works—you just have to do what is best for your child and that also depends on your circumstances and how you live. Epilepsy is nuanced and so is life and how you live and the kinds of jobs my husband and I have are extremely flexible and supportive. It would be so different and much more difficult if we had hourly jobs.
Joining pediatric epilepsy organizations
I will always support all epilepsy organizations. There are two I feel strongly about though: the Pediatric Epilepsy Surgery Alliance (PESA) who supports families of all stages, not just those who’ve had surgery and the Pediatric Epilepsy Research Consortium (PERC) currently led by Dr. M. Scott Perry who is also a pediatric epileptologist at Cook Children’s Medical Center in Fort Worth, Texas. The PERC mission is “to provide a network and infrastructure to facilitate collegial, collaborative, practice-changing research that will provide answers needed to improve the care of children with epilepsy.”
The future of pediatric epilepsy treatments
For those that have pediatric or childhood epilepsy, I hope 30 years from now that the field has come so far along and that it looks very different than it does now. It’s striking to me how little infantile spasms treatment has progressed and we can go so much further. I hope there are more options and that there is a better future—much better than it is today.
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