In Memory of Matthew Leavens

9/16/1995 - 9/13/2013

Matthew’s spirit lives on today through having touched many lives in his almost 18 years.

I noticed Matt’s seizures, which presented as stretching episodes, on our first day home from the hospital. After two months of the pediatrician telling me I was an apprehensive mom and I forgot what a baby does, we packed up and headed to the Children’s hospital ER along with a video of him “stretching” every two minutes. After a week of testing, we were given a generic diagnosis of “seizure disorder” and medication to control the seizures. Control was fleeting. Today I now know, these episodes were most likely a case of undiagnosed infantile spasms. It took fourteen long years and many seizures before we had a diagnosis. I had believed for a long time that Matt could have LGS-it just fit. Matt’s journey of countless meds, sometimes on 4 or 5 at a time, a corpus callosotomy, and unrelenting nighttime tonic-clonic seizures became a way of life which we all come to recognize. I had learned all I could about SUDEP after being told a person cannot die from a seizure. What I learned in real life is that SUDEP can occur even with all the preventative measures in place you can think of. It can happen with or without a preceding seizure. It happens when you least expect it. We don’t win if we live in Fear. My hope is that research brings answers and a prevention that is effective. Even with that life is not a guarantee so lets live how Matt did – happy and content, laughing and smiling and Loving❤

Matt’s personality was bold with an amazing sense of humor. He was always laughing (we called it squealing), smiling and singing-he loved music! Matt was competitive and loved to win so much that yes, he would cheat if he had too!! He loved the color blue and he took pride in his shoes and clothes. Best of all though – Matt’s life was an example of Pure Unconditional LOVE. A lesson that I am so extremely thankful for.