Michael and Mariann Stanton. | M. Spencer Green~AP
Updated: December 27, 2010 2:25PM
Epilepsy claims as many as 50,000 lives each year — grim statistics Mike and Mariann Stanton were unaware of until their 4-year-old son, Danny, became one of them.
Somehow, that horrible tragedy a year ago transformed a blissfully ordinary Chicago family into extraordinary activists. With zero experience but fueled by wrenching grief, their passionate advocacy has brought widespread attention to a rare, little-understood medical condition called Sudden Unexplained Death in Epilepsy, or SUDEP.
To get across the message that they’d never been told — epileptic seizures can be deadly — the Stantons have put up billboards, created more than 8,000 brochures for doctors’ offices, hospitals and families; held fund-raisers to boost awareness and research dollars; and created a foundation that’s gotten more than 10,000 Facebook followers.
But their biggest coup is getting researchers at three major medical institutions in Chicago to launch what will be the first rigorous study of a monitoring device for detecting dangerous seizures during sleep, ideally before they turn deadly. The study launches early next year. Even if it shows the device doesn’t work, Mike Stanton says his and his wife’s work won’t be done until epileptic seizures can be wiped out for good.
Dr. Doug Nordli of Children’s Memorial Hospital, who agreed to participate, called it “extraordinary” that a major study would be prompted by a family’s advocacy.
“You put yourself in the position of a parent who has lost a child, and I think you’re naturally sympathetic and want to help in whatever way you can,” Nordli said.
Before Danny’s death, the Stantons were a family who inspired admiration and envy, with four adorable young children, dozens of close relatives and friends, and lives filled with kickball games, pizza with neighbors and other kid-oriented things.
When Danny died in his sleep from a seizure two weeks before Christmas 2009, their lives could have been shattered. Their second-youngest was an irrepressible boy known throughout their close-knit neighborhood for his exuberant zest for life. Danny’s mere presence made people smile. The shock of his absence still shows in his parents’ eyes.
In January, they created the Danny Did Foundation, after the poignant final words Mike wrote in Danny’s death notice: “Please go and enjoy your life. Danny did.”
Mike’s younger brother, Tom Stanton, who has a background in public relations and volunteer work, serves as the nonprofit’s executive director.
“Sometimes, I step back and I look at what we’ve done in 11 months with this,” said Mike Stanton, 40, an investigator for the Cook County state’s attorney’s office. “What is it about this little boy that has created this enormous presence? He definitely keeps giving.”
More than 3 million Americans have epilepsy, recurrent seizures caused by electrical disturbances in the brain. About 40 percent have seizures hard to control with medicine. They face the highest SUDEP risk, though anyone with epilepsy is at risk.
SUDEP is thought to claim 3,000 lives each year nationwide, but the actual toll is likely higher, said Dr. Elson So, a Mayo Clinic neurologist and leading SUDEP expert who learned about the upcoming research from Chicago colleagues and has offered to take part.
“Even if the impact of this device on the SUDEP risk is small, there should be other advantages from a device that detects seizures, in terms of knowing how frequently a patient is having seizures and also preventing injuries, if not death,” So said.
The Stantons learned about the device, used in Europe, after Danny died. It’s designed to sound an alarm if seizures are detected during sleep. Theoretically, that would give parents time to reposition their child to prevent choking, administer medicine and get help if needed.
The $600 device isn’t approved by the U.S. Food and Drug Administration, but the Stantons initially wanted doctors to recommend it anyway, based on anecdotal yet unscientific reports that it works.
Danny Stanton had only a handful of seizures, at night and always terrifying. For a long time, his parents had him sleep in their bed. They gave him recommended medicine, had him undergo brain-wave tests, and were told he’d likely outgrow the problem.
Stanton knows his son might have died even with a monitor. But he feels he could have done so much more if he’d known death was a possibility, and that overwhelming sense of powerlessness eats away at him.
“We didn’t know what we were facing,” Stanton said in a tearful speech last month at an Epilepsy Foundation of Chicago meeting. “That is difficult to accept and it is maddening.” AP