Ethan’s Story

By: Karen Potocki

Our sweet Ethan was diagnosed with Infantile Spasms when he was 5 months old. He had developed typically for the first few months of life, and then the seizures, irregular brain waves, and heavy-duty seizure medications quickly made him into a shadow of the smiley, bubbly baby we had been getting to know. Fortunately, his contagious smiles and laughter came back after much fighting and therapy, and we enjoy every one that we get.

He went eight months without seizures, and we thought we had beaten the monster of epilepsy. So, we weaned him off his medication, and three weeks later, he started having spasm clusters again. We have been fighting to keep them under control ever since. He has been on nine different seizure medications, as well as a highly restrictive diet, but he is still having daily seizures and is developmentally delayed. In addition, he has been through three brain MRIs, two PET scans of his brain, a spinal tap, many, many EEGs, and countless doctor’s appointments, as well as blood draws. We often say that he has been through more medical stuff in his short life than many people go through in a lifetime.

Despite all this, his belly laughter will warm the coldest of hearts, and his curly, red hair and eyes with two different shades of brownish green are show stoppers. He wiggles his way into people’s hearts in a way that none of us can explain.

We are fighting for a cure to these catastrophic seizures that have taken over my sweet boy’s brain for no apparent reason, as far as the doctors can diagnose.

Please join our fight!