Sudden Unexpected Death In Epilepsy (SUDEP): No one told us….Nothing prepares one for opening the bedroom door and finding their most beloved treasure gone. Nothing. Our only child’s life essence gone.
Andrew’s story begins in St. Petersburg, Florida, born as “Andrew John Wentz” on August 6, 1986. Andrew had the usual upbringing of two working parents—John an undercover police detective, and me rising the nursing ranks at the local Children’s Hospital. He had the pleasure of spending lots of time with many loving people—grandparents, my sisters Diane and Jennifer, and great baby sitters “Ma and Ba.” [Andrew] Nothing out of the ordinary… just a kid that did have incredible balance, who we would find climbing and doing a balance beam act on anything he could find!
As Andrew grew and matured he did the usual guy stuff, tee-ball, and soccer. Andrew excelled at soccer, spending summers at the local college soccer camp. He had the privilege of spending some great summers with his grandparents in Pennsylvania; we would pack his bag and off he would go on the airplane. Andrew loved to go out to dinner with us, and enjoyed trips to Germany and France. He attended different schools of all creeds and colors, and at an early age, we could see that he truly was always defending the underdog. He loved animals, and we had dogs, horses, birds, and a cat.
We began to take ski trips to Taos, New Mexico in order to decompress from our work. Andrew became an amazingly proficient skier for a kid raised in Florida. John and I found his ability truly remarkable. He won NASTAR racing medals, and just made truly beautiful tracks in the snow. John would wildly ski the slopes and Andrew would follow behind, I think to be sure that his dad survived in one piece. I loved to ski in Andrew’s tracks because they felt so free and natural.
But one day after a ski trip, Andrew had his first grand mal seizure and was diagnosed with Simple Partial Epilepsy. He was 11. It was idiopathic in nature—no reason, no family history, it just was. We spent many years trying to determine the right drug combination that would allow him to function cognitively and physically. Eventually the drama settled, but not without trauma to Andrew. Seizures in the classroom, seizures on the soccer field, episodes that truly diminished his self-esteem. He did all he could to not let anyone know that he had epilepsy.
Subsequent side effects of the medication began to raise their ugly heads—problems memorizing, remembering, and just an overall decreased zest for life. Through it all Andrew continued to [Andrew] persevere. My role as a mom had a new added dimension of advocating for his rights, sometimes as an “attack dog.”. Lack of understanding in the school system became so stressful that I felt a visual was needed. To make the point, we even had his dad, the “undercover detective,” wear his police uniform to a meeting with school administration, as I slammed two feet of documentation on “epilepsy rights” on the table for effect. Needless to say, they paid attention.
Andrew made it through high school, but with the issues of not being able to drive or socialize on a normal timetable. He always tried to take it in stride and seemed to gravitate to some great friends that he could count on. Finally, he had a period of time where the seizures subsided; he still needed medications, but was finally able to drive at age 19. This was truly a turning point for Andrew that gave him the freedom he so needed after high school.
Community College was the next step, but the grades weren’t coming without great stress and feelings of inadequacy. Through the grace of God, someone mentioned to me Job Corps, and we followed the path that took Andrew to the Wolf Creek Job Corps program. Despite ups and downs, good times, bad times and sometimes feeling that he needed to leave, he stuck it out. We had many talks about his gentle soul, his kindness toward others and how he would make a good Certified Nursing Assistant. He followed this path and it took one year, and two difficult and frustrating tries to get through it. He finally graduated the week of his death.
Andrew came home a mature, grown man in mind, body, and spirit thanks to the amazing work by Job Corps, and the faith our family had in his ability to succeed on his own timetable! He was happy and said to me, “Mom, I just LOVED my clinicals.” He had intentions of returning to Job Corps to continue after his vacation at home. I was able to hug him and get him settled in for what I thought would be a comfortable night. He told me that he was very tired and wanted to sleep in. The following day, August 22, 2009, I was faced with a parent’s greatest fear and pain—having to open the bedroom door….
Andrew will live in our hearts forever. We were asked to give our most treasured gift. I promised Andrew that I would continue to share his essence in my life’s purpose and nursing work. So here it is for the sake of a cure for epilepsy. Unfortunately, there was no cure for our beloved son. We had Andrew for 23 glorious years. He was a quiet, shy, kind, and gentle spirit—like no one I have ever known.
With tender hearts filled with love and hope for a cure.
Sharon and John