Seizure in Mom’s Arms
I remember how excited I was when I found out I was pregnant with Roman. I remember every visit to my ultrasounds and saved every photo. What we didn’t see from those photos was the Cortical Dysplasia that would eventually make itself known when Roman was 3 1/2 months old and experienced his first seizure at 2am in my arms.
I knew right away and was scared.
After getting admitted to the ER and several scans and tests later, he was diagnosed with Epilepsy as a result of Cortical Dysplasia; the most common cause of pediatric refractory epilepsy.
9 years later, Roman has undergone brain surgery, 18+ medication trials, has been diagnosed with ADHD, Autism, Intellectually Disabled and, of course intractable Epilepsy, he is still smiling.
He is a warrior in every sense of the word.
Some days are better than others for him, but not one day goes by that he doesn’t wake up smiling and singing. He loves music. Roman doesn’t let his diagnosis stop him from anything. He just keeps plugging along. It’s truly inspiring.
A long road ahead
With that being said, we still have a journey ahead of us. The disease has a dark side that includes behaviors and cognitive deficiencies which require special attention and therapy. Roman only has seizures when he is sleeping making him 50% more likely to die of SUDEP (sudden unexpected death from epilepsy). He, at times, gets up in his sleep, goes into a seizure and falls. This has led to some injuries and I feel totally helpless.
As I navigate his future, much is unknown as to what his future will look like. Thanks to Lurie’s Children’s Hospital, friends in similar situations and Roman’s teachers, we are figuring it out as a team. Roman has so many beautiful people in his corner. He makes everyone around him smile.
I write his story today to provide hope to caregivers and parents dealing with the daily struggles of epilepsy and seeing its effects. It’s hard and I wish I could snap my fingers and make my child well. However, that’s not my reality. So when I see my little warrior fighting, I fight alongside him.
One day we will find a cure. One day, my son will get to live seizure free. I hope that for all who struggle with this disease.
Roman’s name is fitting. In Hebrew, it means Strong. He is a warrior and he will win this battle!
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