At almost 37, Cameron Benninghoven had the wisdom of an old soul and the wonder of a young child. He was the picture of good health and fitness—except for the epilepsy that he had been diagnosed with at the age of 16. But that was under control with medicine, and in all of those years he only had a handful of seizures. It was one of those seizures, however, that would take the life of this thriving, good-looking, adventurous and successful young man during the night of November 4, 2009, from a phenomenon known as Sudden Unexpected Death in Epilepsy (SUDEP).
“When Cameron died, we had never heard of SUDEP,” said his mother, Ellen Benninghoven. “We had never even dreamed Cameron could die from epilepsy.”Donate
Ellen’s sister immediately looked up SUDEP on the internet and found the only organization in the U.S. that was doing research in the area—CURE. The family asked that in lieu of flowers, donations be sent to CURE in Cameron’s name and a new relationship dedicated to help find a cure for SUDEP was formed.
Ellen and her long-time partner, Dr. Michael Schafer, set out to fund a CURE research grant for Edward Glasscock, PhD, at, Louisiana State University Health Sciences Center, entitled, “Pharmacological reversal of cardiorespiratory deficiency in the Kcna1-null model of SUDEP.”
“A few months ago, I asked Ellen if she could send me some pictures of Cameron so I could include them in presentations and seminars I give on SUDEP and put up on the wall of my lab,” Dr. Glasscock said. “Cameron is a reminder that we study SUDEP because it has a real human toll. The people and families who suffer SUDEP are not just a statistic.”
Cameron continues to be quite the inspiration. According to his parents, he was as beautiful on the inside as he was on the outside. “He literally loved everything about life,” said Ellen. “Everybody was just so enamored with him.”
Ellen believes that societal pressures kept her son from going to a doctor regularly and being checked to see if he needed to increase his medication. “People who have epilepsy have difficulty getting jobs, getting insurance,” she said. “You can’t get a driver’s license if you have had a seizure within 12 months.”
The couple honors their son with their work with CURE and making sure they spread awareness about SUDEP. “Our concern is two-fold,” Michael said. “That meaningful research and awareness about SUDEP are increased. I’m a physician and I didn’t even know about the dangers of SUDEP,” Michael continued. “He lived a perfectly normal life with the occasional seizure.”
Michael said that he believes that many neurologists worry that it is enough of a burden for parents and patients to be told they have epilepsy. “They don’t want to also burden them with the possibility that they could die from it,” Michael said. “We want to reverse that.”
HOPE4SUDEP is an ongoing initiative to honor the life of Cameron Benninghoven. Cameron’s family and friends have partnered with CURE to maximize their fundraising and awareness efforts.