According to www.onthisday.com, Saturday, February 4, 2012 was an uneventful day. But for us, this day fundamentally altered the course of our family: this was the day that we found our beautiful nine month old son Jack, non-responsive and feebly clinging for life in his crib an hour after putting him down for the night. After a panic-stricken run to a children’s hospital nearby, we stood by in shock as a huddle of fast-moving doctors and nurses frantically worked on his tiny body to support basic vital processes, like breathing, and to stop what we later learned was an hour-plus length seizure.
Before this day, Jack had no health issues – he was a full term baby, there were no issues during pregnancy. But this night was our crash course introduction to Jack’s type of seizures, and epilepsy more generally. In the weeks that followed we learned that epilepsy (also called a “seizure disorder”) is common and refers to having unpredictable seizures, which in some cases, can cause other health problems. And we now know that there are a wide range of seizure types, and they can look very different from person to person, which makes sense given a seizure has been analogized to an electrical storm in one part or across different parts of the brain. We learned that many seizures do not look like what one sees on television or in the movies.
Jack’s epilepsy involves infrequent seizures, often months apart, but usually seizures that do not stop on their own (something called status epilepticus) and require emergency medical intervention. We are fortunate that Jack does not have any other health issues to date resulting from the seizures. But although infrequent—like a lightning strike—his seizures can happen at any moment, and often occur in the middle of the night or early morning. On weekdays. On weekends. On Christmas Eve. While out of town. In the car. On an airplane. At home.
A striking feature of epilepsy is the impact it has on the lives of individuals and families outside of the seizures. We have had countless ambulance runs and hospital stays, in addition to ever increasing doses of medications, and up to now four brain surgeries. We have gone years scheduling family vacations with the first priority being proximity to a children’s hospital. Our two other children are all too familiar spending the night with a friend or neighbor after enduring the trauma of watching as mom and dad frantically work to stabilize Jack and get him to the hospital so things do not devolve when the seizures do not stop on their own. Each of us has four alarms set daily on our phones to make sure he does not miss a medicine dose, which missed doses could trigger a serious seizure.
At one time, the thought of one of our children enduring a surgery for ear tubes was uncomfortable. A short few years later we are discussing whether certain parts of our child’s brain can be removed or disconnected to stop seizures. Although long, our medical journey has provided hope and we have been fortunate to have been guided by an incredibly talented and caring group of medical caregivers. After each surgery we have believed that he might be seizure free and we could return to life without medications and seizures. Jack’s last surgery was in July 2020, and was a surgery not even available five years ago. For Jack and the other 1 in 26 people that will develop epilepsy in their lifetime, epilepsy research is a critical bridge to continued improvements in treatments. But despite the fact that epilepsy is so common, epilepsy research remains severely underfunded.
Jack is an incredible person who constantly inspires us with his intelligence, strength, kindness, sense of humor and warmth. Aside from the seizures, he is no different than any other nine year old. Yet, we know that his future will largely depend on continued advancements in research and treatment of epilepsy. We are optimistic that a day will come where we can declare that Jack is seizure-free and resume the seizure free life we left behind on February 4, 2012. In other words, we hope for a cure.