Faces of Epilepsy - Max Race - Epilepsy Foundation of CT

Epilepsy was the farthest thing from our minds when our first child, Max, entered into our lives in July 2007. That changed one morning when Max was just four months old. At around 5 a.m., we awoke to a strange sound coming from Max’s room. We scooped Max up from his crib and immediately realized he was having a seizure. Later that day, as our new family met with doctors at the hospital, we found out that Max had been having more than half a dozen seizures each day in the weeks leading up to the breakthrough seizure we experienced that morning. What we thought was acid reflux distress was actually a cluster of seizures wracking his body every few hours throughout the day.

 After a few tests and lots and lots of tears and questions, the pediatric neurologist entered the room, sat down and said the words we will never forget: “Your son has a seizure disorder called Infantile Spasms. Of all the seizure disorders, this isn’t a good one to have. We know the least about it and the seizures are very hard to control.” He went on to tell us that we were definitely looking at some sort of cognitive and motor delays, the significance of which we would not know immediately. The spectrum he outlined for us went from severe mental retardation to some possible learning difficulties. Max’s life was about to become one long exercise in “let’s wait and see.” Just like that, epilepsy was front and center in our lives.

 Thankfully, following a week in the hospital, Max responded well to the powerful hormone treatment prescribed to stop the seizures. At this point, although he was four months old, he was developmentally a newborn, starting his life over again. At one point our neurologist compared Max’s brain to an Etch-A-Sketch. Picture someone drawing an elaborate picture (this was Max’s brain), then shaking it to completely erase that picture (this was Max’s brain on seizures). We had no idea how quickly or how completely that picture would be redrawn.

 Max is five now. Even though Max’s seizures are well controlled, we never know when one will strike. We have to be diligent every time he has a fever or experiences stress. Every day we wonder if today is the day the seizures will start again. That said, every day without seizures means Max can continue to grow and blossom into the great kid that he is. He is currently in kindergarten and although he receives speech therapy, occupational therapy and physical therapy to help him overcome his developmental delays, he is able to hold his own with his peers. He is a bright, curious little boy with a big smile and big heart and he simply loves learning.

 We are thrilled that seizures don’t consume our daily lives, though the side effects that come with epilepsy—developmental delays, anxieties, behavior, etc. —do cause a great deal of stress and grief. We are extremely grateful for organizations like the Epilepsy Foundation who are fighting for research, awareness and education on behalf of those with epilepsy. We are also so lucky to have found a supportive network of families, though at different places in their diagnosis, who can support each other whether in person or virtually. And we are always in awe of people just like Max who show us everyday what is possible.

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