By Amber Kaiser
I recently had the opportunity to meet Jon Scheinman to learn more about him and his family and their experiences living with epilepsy. A short time ago, I read an article he wrote highlighting the reality of the daily stresses and struggles of being a caregiver to a child living with epilepsy. Jon was open to sharing more of his family’s story, where they are today, and his hopes for the future of epilepsy treatment and care.
It was 2004 and Livy’s condition was complicated with epilepsy and cerebral palsy. She was diagnosed with a generalized brain malformation. We had to learn quickly how to care for her. She had multiple brain surgeries and was taking AED’s early on, so there were naturally lots of side effects that her body was going through. She is now 18. Even though she had multiple surgeries and still takes 5 seizure medications, she continues to have daily focal seizures.
Despite the developmental challenges Livy has including with her speech, she and her twin sister, Hailey, have a special bond. Hailey has been one of her biggest advocates, speaking at events and fundraising. She’s taken on the caregiving role as well. At 18, Hailey sees how she can help Livy and supports her mom and dad the best she can.
Hailey will be going to college soon and Livy is cognitively aware of what is going on around her. We will have to see how things go when Hailey leaves and adapt to her not being home everyday. Livy communicates through sounds and doesn’t often get sad. We’ve always been together as a family in epilepsy advocacy.
Realistically, it’s the personal story that helps others understand. People are affected on the spectrum across the board—whether someone has one or two seizures, or they had them and then they stopped, and there are those who will always have seizures. A lot of people still don’t realize that there isn’t just one type of seizure, but that there are many different kinds of seizures. They also don’t realize all the effects that epilepsy has on the caregiver, both mentally and physically. It’s a lifelong journey and you have to live it to truly understand how challenging it is. I try to be authentic and open to feeling vulnerable to share my experience and help others.
I’ve been working with the Epilepsy Foundation (EF) for 7 years now. My family had done a lot of fundraising for EF over the years and I eventually found my way there. A position came open in community engagement and allowed me to move to the nonprofit space. In my role, I traveled around the country and talked to families and volunteers, getting them more involved in the foundation’s mission. Then I moved from that role to the Director of Kids Crew, a program my family and I built to empower kids to share their story and educate their peers about epilepsy, and to help them feel less alone. At this point, the Foundation’s direction is more data-focused, and now I’m the Director of Data Analytics, using the skill set I developed before joining the organization. I’m working with people who are really passionate about this cause. It’s fantastic to see my colleagues focused on making a difference, and I’ve been inspired by my teammates and the work that they do.
Especially from a predictability standpoint, data science and AI help us to take action and get peace of mind. The advanced technology that’s coming out as far as pre-meditating seizures—that industry is changing rapidly.
I think the stigma is getting better slowly in the US and some other developed countries. However, in Africa and parts of Asia, there is still a large lack of education. Many laws have been passed in the US recently where school personnel have to be trained in seizure recognition. The Epilepsy Foundation is working on getting it done in all 50 states. Things are progressing, but there is still not enough awareness and education in the general public.
It’s great to see that both pharma and biotech companies are working more closely with patients and caregivers to help with new medicine and devices to change the way treatments are developed. There is also a lot going on in genetics testing. The more genetic indicators that are uncovered, the more likely we can produce targeted medications. For surgical options, ablation is one of the most promising. Thermal ablation, also called laser interstitial thermal therapy (LITT), is a newer and less invasive brain surgery.
Everyone with epilepsy has a different life experience. Some are diagnosed as babies and children, others as adults. The types of seizures they have and how often they have them can vary greatly. Seizure frequency and type often change throughout a person’s life based on many different factors. Seizures, epilepsy surgeries, and medications can also have life-long side effects. The care a person with epilepsy receives highly depends on the type of seizures, their age, and living circumstances at the time of their diagnosis. Access to quality care can be a challenging issue for many families. Having close family and friends who want to help and learn about epilepsy can significantly improve outcomes.
Jon highlighted for those that are caregivers, so much effort is put into helping the person with epilepsy, and there still isn’t enough being discussed about the caregiver. The experience takes a major toll on relationships, mental wellness, and the rest of the family. The caregiver is stretched in so many ways and needs support as well.
The beginning of our journey was traumatic. We were in the NICU at the time and learned about the epilepsy syndrome Livy potentially had, what disabilities came with it, and the potential for death after a year or two. We got these topics from our doctor and had to find more information ourselves. It was up to us to advocate for Livy, learn about epilepsy, and be first time parents all at the same time. It was like going from kindergarten to suddenly taking your first job without being taught, and you have to learn quickly about the terminology and the steps you should be following. From a parent’s perspective, you are most concerned about your child and often forget to take care of yourself. Post traumatic stress disorder, perpetual stress and other anxiety behaviors naturally start developing and there is never an end. Living with epilepsy and being the caretaker to a family member with epilepsy can become a continuous traumatic event.
In general, there comes a time of acceptance of what life will be like. While I never stop looking for improvements in the medical field and treatments that can help, there was an acknowledgment of my daughter’s condition that had to happen. Accepting that things are going to be like this and that was okay. Letting go of the mental anguish, of what could have been versus what is, is so important. A big part of the journey is coming to terms with what is possible and giving your child the best quality of life you can.