Danny Stanton was a healthy, happy kid. He and his three siblings -- younger brother Tommy, older brother Johnny, and older sister Mary Grace -- were extremely close. He loved sports; he was already a switch hitter and could ride a two-wheel bike at four years old. Danny's preschool teacher told his parents that the first thing Danny said to her on his first day of school was, "I just want to learn."
"He was just the most engaging, athletic, inquisitive kid you'd ever meet," his father, Mike Stanton, a police officer in Chicago, told HuffPost. "In every way in his life, he was unique."
But when he was only two years old, Danny experienced his first night seizure -- his eyes rolled back into his head and he started to shake violently. Mike and his wife, Mariann, didn't know what was happening to their son, but they rushed him to the hospital. After a round of tests, the doctors weren't able to determine what caused Danny's seizure. But they assured the Stantons that Danny would be OK; children often outgrow their seizures, doctors said, and they shouldn't worry.
"It was horrifying to wake up to that," Mike said. "But we were given this sense of comfort, that everything would be fine."
Danny experienced a few more seizures in the years that followed. Neurologists and other doctors met with him consistently, but none ever gave the indication that Danny's seizures could eventually be fatal. Danny was put on daily medication, but otherwise, he lived a normal life.
"But then, here we are now," Mike said.
Just over two years after Danny's first seizure, on a December morning in 2009, Mike and Mariann entered Danny's room to find him lifeless. Five EMT personnel attempted to revive him in their home, and he was again rushed to the hospital, but Danny could not be saved. He was a victim of SUDEP: Sudden Unexplained Death in Epilepsy.
Mike remembers getting home from the hospital that day. "My wife and I were up in our room looking at each other, asking: how could this happen? How could we not know that something like this could happen? We were so involved in his life, in his health, how did we not know this was a possible outcome?"
Rather than turn inward, Mike and his family made the decision to take action. They enlisted Mike's brother, Tom, who had a history of working with non-profits and legal organizations, and together, they formed the Danny Did Foundation -- its name a take on the words Mike wrote at the end of Danny’s death notice: “Please go and enjoy your life. Danny did.”
"When we started, we didn't have a real framework for how it should work," said Tom Stanton, who is now the executive director of the foundation. "But we just posted a little Facebook page, and Mike just started posting pictures of Danny, with captions -- very personal thoughts about his son. And then, all of a sudden, we had 3,000 fans within 48 hours."
Things grew from there. Initially, the foundation was just focused on drumming up awareness for SUDEP, but soon they began promoting prevention methods, purchasing seizure detection and prevention devices for families with children in need (such a device might have saved Danny's life) and sharing their findings with doctors and hospitals nationwide. The site currently features a slew of emphatic testimonials from families who have been helped by the foundation.
Mary Duffy, who is now the chief operating officer for the foundation, told Mike early on that they'd need to "start big and stay big" if they wanted to have an impact, and Mike has taken that mantra to heart. He and his family continue to work tirelessly for their cause, despite his own full-time job as a Chicago cop.
"The most important thing I want to communicate, through all of this, is Danny himself," Mike said. "It's Danny that drives us every day, without question."
Of course, Mike wishes someone else had started a similar foundation before Danny died. Their desire to raise awareness for SUDEP and epilepsy in general is mixed with the anger they feel about how little information they were given about Danny's condition.
"We certainly wonder sometimes why we had to do this," he said. "Why didn't somebody else do it first? If we had known what was possible, we might have treated it differently. The term epilepsy had never been raised to us. There was a real failure on the doctors' part to provide this information."
Currently, epilepsy claims the lives of 50,000 people each year; more than breast cancer. The Danny Did Foundation is "urgently committed" to getting the right information to doctors across the country -- to let them know that these seizures can be fatal, but with enough detection and care, there are ways to prevent fatalities. And they're here to help.
"We want a meaningful, measurable, and immediate impact," Mike said. "We don't want to wait around."