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All Parents of Children With Epilepsy Should Be Warned About SUDEP

September 21 was a Monday in 2015. It seemed to be an ordinary Monday, and I was one of the few people I knew of at the time who looked forward to Mondays — a return to routine, something I desperately needed and still need in my life, especially being the mother of Matthew, my son who was on the autism spectrum.

I got up early, around 5:30, made myself some coffee with my Keurig, sat down on the couch and turned on MSNBC’s “Morning Joe” as I did every morning, and then, with my iPhone, I opened up Facebook and started reading the early posts. I likely commented on the latest political scandal, as was a common practice of mine. Early mornings used to be my favorite time of day — “me time” — a time to get my mind prepped for the day that followed my two cups of coffee.

6:30 rolled around, and then it was go-time. I knew I needed to wake up Matthew and start his breakfast, get him prepared for the day. I quietly climbed up the stairs and tip-toed into his bedroom at the top of the staircase. It was unusually silent in his room. Matthew wasn’t making his “morning noises,” but he was a teenager, and teenagers sometimes sleep soundly. I sat on the bed and gently patted his arm. I realized, to my horror, my sweet angel was dead.

Screaming, screaming, screaming. His father rushed into the room with his cell phone and dialed 911.

September 21 should have been a beautiful autumn day, but for me, it was the worst day of my entire life. I didn’t know how this could happen. I knew Matthew had epilepsy, but he had medication and also a vagal nerve stimulator. Why? Why did no one ever tell me epilepsy could kill him? Why? My sweet, innocent boy whose face, those twinkling green eyes, toothy grin and moppy blonde curls, had graced newspapers across the country because he was unquestionably the most beautiful child imaginable, why did he die? And what kind of doctor wouldn’t at least arm a mother with the proper information so she could prepare for or take measures to avoid such a tragedy?

The truth is, most neurologists don’t warn patients or their guardians about SUDEP, sudden unexplained death in epilepsy. Alarmingly, one out of every 1,000 adults with epilepsy die of SUDEP each year, and one out of every 4,500 children with epilepsy die of SUDEP annually.

A recent article in the New York Times stated, “Sudden death in epilepsy is a little-known and seldom-mentioned phenomenon, but now, after a push by advocates, the federal government has begun a concerted program to understand it. Yet a question remains: When, if ever, should patients be warned?”

I can answer that question. I, Matthew’s mother and primary caregiver, had a right to know, and I would have liked to have been given the opportunity to, at the very least, attempt to avoid Matthew’s death. My Matthew was my world, and I fully expected to be pushing his red wheelchair until my legs gave out around age 100.  

I can’t bring my Matthew back. But I can help spread awareness. If your child has epilepsy, be informed. Never miss a dose of their anti-seizure medication. Get a mattress with an alarm (even if it only gives you peace of mind). Look into seizure-sensing dogs. And teach your child to sleep on his or her back. My Matthew loved stomach sleeping. Had I known this was dangerous, I somehow would have trained him to sleep safely.

I miss my funny, energetic, loving, gorgeous boy every day. I miss his giggles. I miss the devilish grin on his face that always came directly before he got into mischief. I miss how he used to play with his Slinky until it was a knotted-up mess. And I miss his sweet, soft kisses which he gave generously.

Please, in remembrance of him on September 21 of every year, wear an orange ribbon. Yes, I know purple is the color for epilepsy awareness. But my boy loved orange. His sweet face still appears on autism websites and newspaper articles. The world isn’t quite right without him.

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