The Spieth Family

2022 Winter Walk Featured Family

Many will recall 2020 with memories of masks or Zoom. Our family will remember it as the year Kevin was diagnosed with epilepsy. My husband, daughter Jenna, and I will never forget Kevin having a grand mal seizure in the driveway, Eric driving to the hospital as we rushed to close the van doors because 911 was taking too long, asking questions, then hovering outside the ER cubicle as a team of eight staff tried to get the seizures to stop. It seemed like the flood gates had opened and Kevin’s body wouldn't respond to medication.

When he was very young, Kevin was diagnosed with a genetic disorder, MeCP2, as well as agenesis of the corpus callosum both of which affect cognitive and motor skills. Therapies and excellent care from the Cleveland Clinic and Westlake City Schools helped him move with a walker, communicate without words, and even swim on his back. Through medical testing and exercises Kevin cooperated with most, tolerated some, and offered high fives or smiles to all. His disorders did not stop him from expressing his love of music and he is a proud member of the Rock and Roll Hall of Fame!

Early research of MeCP2 stated that if the boys made it past their teens without seizures, they were home free. Kevin had absence seizures when he was young or overtired and I was hopeful these would be it. With puberty, came some body twitching and weak limbs. Still EEG’s were inconclusive. Three months before Kevin turned 18 he had the grand mal seizure episode that began a new chapter for all of us.

We have been blessed with a huge variety of people coming into Kevin’s life when we have needed knowledge and experience. We left the Epilepsy Ward after three days with prescriptions, a new neurologist, and family on speed dial. With their guidance and positive outlook, we have been able to negotiate medicinal “cocktails”, medical jargon, and general questions.

This summer Jenna, who will be 16, had the opportunity to work as an intern with the wonderful staff at the Epilepsy Association and volunteered at this summer’s Race the River and this Fall’s Gala. She is learning the necessity for raising funds so there will continue to be a program to help families like us navigate our new normal. We, the Spieth family, feel privileged to be the featured family of this year’s Winter Walk and wish all a blessed future on your journey.