The Start of the Jackson Casey SUDEP Awareness Foundation

On May 11th 2016, the worst thing imaginable happened to our family. Our son and brother, Jackson Casey, died from a little known killer called SUDEP (Sudden Unexpected Death in Epilepsy). It was only Jackson’s third seizure. Jackson 17, one month to the day before his 18th birthday, he was very healthy and had no prior medical issues and never had any kind of seizure before January 2016. In February, after Jackson’s second grand mal seizure, multiple tests were ran including an MRI and an Epilepsy EEG; all came back normal. In fact, the doctors told us that everything would be okay with Jackson. Most likely, Jackson would grow out of having seizures altogether and be able to eventually stop taking medication. That news was a huge sense of relief and blessing to hear but also provided us with a false sense of security. 

We cannot change what happened to Jackson and it is painful to reflect on all of the ”what if” scenarios that creep into our minds. So instead of that, we ask “What if by sharing his story we can help to educate and possibly even save the life of someone at risk for SUDEP?” In fact, our daughter Amanda’s Senior high school research project on SUDEP was used by the national Epilepsy Foundation. It’s hard not to consider that if we would have truly understood all of the risks, is it possible that Jackson would still be alive today?  Jackson’s life on Earth was way too short but his life is worth every moment and more that we invest into the Jackson Casey SUDEP Awareness Foundation (JCSAF). Jackson inspired and touched so many lives, he truly is forever in our hearts.