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Ethan’s Story

By: Emily Bonomini

Our sweet baby Ethan came into this world two and a half years ago. What a wonderful day that I will always treasure. The days and months that followed were a little harder. Ethan struggled with every feeding and never slept. He got sick often and never seemed too happy. All of this was passed off as reflux and colic.

But as Ethan began to grow I noticed their were other things that didn’t make sense. He never imitated my facial expressions, he wasn’t interested in playing the silly games you play with your baby, peek-a-boo or pat-a-cake. He would also sit in front of cartoons for hours and get very upset if you moved him.

At 12 months old Ethan had what I thought then to be a breath holding spell in which he fell to the floor, turned blue and his body shook. I would learn later this was his first noteable seizure. He continued to be a sweet child who enjoyed being with his sister, but was not developing any language skills. When I sat down to play with him he would leave the room. My heart was breaking. This child whom I loved so much seemed to have no interest in me. What was I doing wrong?

Five months later during a therapy evaluation Ethan had a staring spell in front of the evaluating nurse. When questioned about it I realized this wasn’t the first time I had noticed this. Two days later Ethan had a different type of seizure right in front of me. I knew then we needed to see a neurologist. We got the referral and within a few weeks Ethan was given the diagnosis of epilepsy with atypical absence seizures.

It’s been a year since that diagnosis. It was the first of several diagnoses of neurolgical disorders Ethan has received this year. Speech/language disorder, PDD/NOS and sensory integration disorder. At this time his seizure medications are working, I pray everyday that it continues that way. I also pray everyday for a cure for epilepsy.