When you have a child, you expect your life to change, but Rob and I never expected to have so many dramatic changes with the birth of our second child. Evan entered this world with a rush of excitement and after a two hour labor he was born nine minutes after we arrived at the hospital. Surreal is the word I used to describe the experience and it’s a word I have used many times since.
The seizures began in his first month of life. They were subtle and quick but by the time he was two years old they were constant. We raced through medications hoping to find something that would stop this increasing trend. Nothing seemed to work and we lived with daily seizures, constant medication changes and far too many medical tests for someone so young to have to endure. We became well-versed in the medical terminology of epilepsy and began discussing brain surgery. Surreal.
As we searched for a solution for Evan, keeping track of all the seizures and medications became a daunting task. The sheet of paper we were given with 365 boxes on it to log a year’s worth of seizures was a jumble of numbers, notations and highlighted codes. Out of frustration, Rob started working on an online tool to help us identify trends and just keep up with Evan’s ever changing meds and increasing
seizures. When he was finished we began logging all of Evan’s seizures into it and when we showed it to our neurologist, he asked if other people could use it. We looked at the tool with a different perspective and knew it could be helpful for other people but it was too specific to Evan so it needed to be more comprehensive. Rob went back to work on the passion project that was molding a new direction for our lives.
By the time Evan turned 4 years old he was having 300-400 seizures a month and the time for brain surgery was unavoidable – the decision made itself. The seizures were ravaging his brain and taking a toll on his body. His personality was dulled, he had dark circles under his eyes and he looked frail and sickly. Evan has a diagnosis of Tuberous Sclerosis Complex and Epilepsy and his seizures have always been very hard to control with medication. In the same time period Rob had also finished his work on what is now SeizureTracker.com. Ironically, it was launched from the hospital while Evan rested after having brain surgery. I remember sitting with Evan while he was sleeping in the ICU and Rob walked in looking excited and scared. He said four words which would end up changing our lives in a different way, “I just launched it!” We switched places and I went to the waiting room where he had been working and posted two message board announcements on the Tuberous Sclerosis Alliance and Epilepsy Foundation websites. People began using the site that night.
When we left the hospital Evan was seizure-free! For almost two years we led a very different life, no longer expecting to see a seizure every day. When that began to change we were devastated. Evan is currently having 3-4 seizures a month. They last several minutes, always require an emergency medication and happen in his sleep. Now we sleep with Evan in our bed and try not to ever sleep too soundly for fear we will miss a seizure. Clearly this is not the best long-term plan.
Looking for a new solution for Evan brought us to the decision to get a service dog trained as a seizure assistance dog. Part of the application requirements was something from Evan representing why he wants a seizure dog. Evan decided to write a book and we self-published My Seizure Dog as a fundraising tool to raise money for Evan’s new dog. The response from Evan’s book has been dramatic and ended up doing something we never planned. Evan raised enough money to help 7 additional children complete their fundraising with 4 Paws for Ability and brought public awareness to the topics of epilepsy, tuberous sclerosis and service dogs. Evan will meet his new best friend in July 2012 and we know the experience will be life changing and lifesaving.
To read more great personal stories like this, please visit MyEpilepsyStory.org