Reagan’s Story

March 3, 2013 a day etched in my memory forever. I woke early to find Reagan, then 15 months old, drooling, gray and unresponsive. The ambulance ride that followed seemed to take hours, the nurses didn’t seem to work fast enough and the doctor must have had it wrong as she confirmed Reagan had a seizure.

That seizure was the first of more than I can count and within months Reagan was diagnosed with both epilepsy and Cerebral Palsy. The life that I envisioned for my child was taken away in one fell swoop. The seven years that have followed have been filled with seizures, countless medications, seizures, hospital visits, seizures, loss of cognition, seizures, unanswered prayers, seizures, and the medical ketogenic diet. But they have also been filled with hope and a child whose resilience is beyond astonishing. Reagan has endured more at her age than most adults due in a lifetime, yet she handles it all with grace and a smile.

Today, at nearly nine years old, Reagan amazes me. She accepts that epilepsy is a large part of her life, but never lets it dictate how she lives her life, with postivity, perseverance and kindness. Reagan has become an advocate not only for herself but for other children living with epilepsy. She uses every opportunity to educate others by putting on awareness events, talking to peers and even helped create a book based on her life.

While Reagan has experienced some periods of seizure freedom, much in part to the ketogenic diet, our wish for her and others living with epilepsy is a cure. As a parent watching your child seize is nothing short of traumatic, an experience I would never wish on anyone. Yet, we have sadly watched as friends children have also been diagnosed with this devastating neurological disorder. The time is now to find a cure for Reagan and everyone living with Epilepsy.