A sheet of slush covered the front yard of the Stanton family home where the neighborhood kids would come together to play kickball and eat pizza. It was where Danny Stanton became the best buddy of the Leona Avenue kickball team. It's where his father Mike would resod the front lawn four or five times over those handful of years. Inside their suburban home, in a cozy family room filled with couches and a plastic basketball hoop, is where the Danny Did foundation all began.
On March 8, mere hours before Northwestern’s Dance Marathon, the Stanton family prepared for the night ahead. The night was cool, the snow slowly disappearing in bunches around the neighborhood of Edgebrook. The kids — Mary Grace, Johnny and Tommy — were nagging like kids do. Mike and Mariann gathered their belongings and made sure the kids were ready to go. His nerves settled in. Over the past month, Mike condensed his thoughts about the foundation and his introduction to his son Danny into six pages to share with the crowd of supporters. He would have a 20-minute ride to mull over his thoughts before the festivities began.
Shortly after 6:30 p.m., a rumbling resonated outside the entrance to the tent. Dancers rushed down the stairs of Norris in a calculated mess, legions of assorted faces filled with joy and anticipation. Beneath a set of glowing green lights, the Dancer Relations crew waited for whoever passed through their tunnel. But as the dancers skipped down the illuminated road to the darkened tent, the place where they were prisoners to their own movements for the next 30 hours, the crew let out an inaudible roar, a year in the making.
The Stantons stood beside the tunnel of glowing shirts. The joy. The exhilaration. The dedication. Mike, Mariann and their three kids, Mary Grace, Tommy, and Johnny, watched each dancer pass by. The kids pumped their fists, just as the dancers shouted. Mike stood tall, his hair short and brownish blond with sprinkles of gray near his ear, his denim just over his ankles. He wore a white heart across the chest of his navy sweatshirt with the words “Danny Did” underneath. Mariann has long brown hair with a svelte figure, reminiscent of her days as a starting point guard at Loyola University in Chicago. Tears were in her eyes, as the joy and despair of the moment overwhelmed them.
Danny was just like his siblings: athletic, smart and rambunctious. He had blue eyes, short, dirty blond hair and rosy red cheeks. When Danny was three, he learned to ride a two-wheeler. When he was four, Danny could hit from both sides of the plate and played on his older brother Johnny's baseball team. Sometimes he had a short temper, so his grandmother would call him “Little Toughie.” His first words in preschool, Mike said, were “I want to learn.”
For just over a year, the Stanton family waited for this moment before scattered lights and screaming dancers. But their journey, as a foundation and as a family, has been several years in the making, ever since the sudden and unexplained death of Danny Stanton — a son, a brother, a nephew — one December morning just over three years ago.
Just after 7 p.m., Mike Stanton stepped out on stage to greet the legion of more than 1,000 dancers. It is the first time in 39 years that Dance Marathon broke the 1,000-dancer mark, but to Mike, this moment was only the beginning. He paced from side to side, a sheet of paper loosely held in his soft fingertips, and stared out into the scrum of students before him.
"For the next 30 hours, we will dance," he told the crowd. "We dance with you ... and you will be fueled by the soul of Danny Stanton's life."
By night's end, Johnny was torn between playing in his afternoon basketball games and dancing with the exhausted crowd. Mary Grace opted to skip her games, and joined her mother at DM’s 5K event. Tommy would stick back and get a ride from the neighbor to his games. Mike would hang around throughout the day in awe of the spectacle unfolding before him.
***
Mike remembers the first time Danny had a seizure. It occurred one night, at around 10 p.m., in 2007. Danny, then 2, was sleeping in bed with Mariann when he started shaking. Mike jumped out of the shower to investigate. "We didn't know what was going on. His eyes were rolling back. He was shaking. We ran and got our next-door neighbor [who was an ambulance commander for the fire department]," he told me. "That began our journey with doctors. We were told that night there was no known cause for that seizure, there was no trigger or knock in the head, there was no internal trigger that they could see. And they said sometimes this just happens to kids."
A month later, Danny had another seizure. This time, he was sleeping with Mike. “It’s terrifying to see,” Mike said. “It’s your son. The noise he made was like when you shoot up from underwater and gasp for breath.” He and Mariann took Danny to the doctor, only to leave with no clear answers. “It all seemed lighthearted. Then we let him go in his own bed.” He was then placed on anti-seizure medications, but still, doctors gave no indication that there was a larger problem. They told Mike that Danny had a childhood seizure disorder that would likely pass in two years. After leaving the hospital, Mike and Mariann felt relieved and thought Danny was finally coming out of the woods. For the next year and a half, Mike and Mariann would sleep with Danny to help him in the event he had a seizure.
The night of Friday, Dec. 11, 2009 was no different from any other. All the kids were playing in the basement. Mike remembers Danny yelling from the ground floor with his high-pitched, raspy voice. "Hey Dad, I sure am glad I'm getting that remote-controlled car for Christmas," Danny said. He had hidden the kids' presents in the basement. At 10 p.m., Mariann was sitting on the couch, holding Danny. As she carried him up the stairs and through the kitchen, Mike gave him a kiss and told him, "Good night." Before she tucked Danny into bed, Mariann whispered, “I love you, sweet boy.”
The following morning, while lying in bed, Mike glanced at his clock. It was 7:14 a.m. "Mariann came running into the room, screaming, 'Mike, Mike, he's blue. He's not breathing,'" he said. Mike took Danny's warm body downstairs through the living room, past the marble countertop where Danny used to sit beside Tommy, Mary Grace and Johnny each morning for breakfast, down the wooden staircase toward the family room. Mike laid Danny on the rough carpet floor underneath the plastic basketball hoop.
"And I started trying to resuscitate him," Mike said later. "I peeled his eyelids back, and I swear I thought I heard something coming out of him." Mary Grace, then 8, screamed, "What's going on? Is Danny okay? Is he dead?"
The rest of kids were in shock, unaware of what was happening. They knew Danny was hurt. They just wanted to know exactly what was going on. As the paramedics rushed Danny to the hospital, Mike jumped in the car behind them. He left the kids with their neighbor. He remembers it was bone-chillingly cold outside. The sun was shining so bright that when he reached into the glove box, he struggled to find his sunglasses.
When they arrived at the hospital, they followed the gaggle of EMTs to the emergency room, their unresponsive son lying on the gurney. Mike and Mariann watched the medical staff try to resuscitate Danny from behind a curtain, even as the line on the EKG machine was flat. Mike saw the tears in their eyes, the anguish on their faces. Shortly thereafter, Mike and Mariann were informed that Danny was officially dead.
"I was thinking, 'I hope this works out,'" Mike said. "The next thing I remember, it was just me and Danny and Mariann. I picked him up and I lay down on the hospital bed, with Danny in my arms. Mariann lay next to me and we took all the tape and tubes off of him. He just lay on our chest. He was growing colder and colder, his cheek against my cheek."
In the aftermath of Danny's death, as people swarmed the Stanton family home and sent their condolences, as the frozen lasagna piled up in the kitchen fridge, all Mike wanted to know was why his son had died.
***
Roughly one in 26 people will develop epilepsy at some point in their lives, according to a 2012 Institute of Medicine report.
But Sudden Unexplained Death in Epilepsy, or SUDEP, is a rare condition in which younger people with epilepsy die without a clearly defined reason. While the cause of death is unknown, research suggests that a combination of impaired breathing, increased fluid in the lungs and lying facedown in bed could cause a person’s death after an epileptic shock occurs.
Earlier that week, the doctor had assured the Stantons that their son was “out of the woods,” and yet here they were, a family stricken with grief. Before that appointment, Mike would sleep with Danny in his arms, just in case he had had a seizure at night. But after the doctor’s appointment, Mike and Mariann let Danny sleep by himself. The two wondered why there hadn’t had been a device on the market that would alert caregivers in the event of a child having a seizure.
Just hours after Danny died, Mike and Mariann were together at home, trying to wrap their heads about what happened. They hadn’t known much about epilepsy – the symptoms, the warning signs, the consequences. They hadn’t known that two unprovoked seizures meant their child had epilepsy.
“If he had a seizure when I was with him, I could address it,” Mike said. “But the time that I wasn't there, he did die. There's a good chance we wouldn't be where we are today.”
Less than a month after Danny’s death, in January 2010, Mike launched the Danny Did foundation with a single click of a Facebook page. Mike posted a picture of Danny along with description of the foundation. Mariann left her job as a high school teacher to take care of matters at home, while Mike, working with his brother Tom, spearheaded the awareness campaign. On the first day, the page received roughly 1,000 likes. On the second, the number nearly tripled.
Tom, who worked in public relations consulting at the time, knew the movement lacked an infrastructure or funding base. There was no board of directors, only a confluence of supporters on a social network. Over the first year, the foundation raised much of its money from fundraising events. Many of the donors were from the Chicagoland area. He had been on nonprofit boards of directors before, but he had never been in the position where he had to help organize a foundation from its infancy. But Tom viewed his brother's persistence as the beginning of Danny's parents' journey to coping with their son's death.
“You need that time to grieve and process and necessary after a tragedy like that,” Tom says. “The foundation was a lifeline for Mike to feel like he was able to keep growing and nurturing like he would if Danny were alive. In a lot of ways, it was almost therapeutic for him.”
The foundation began to look into seizure alert technology. At first, they figured a pulse oximeter would work. The device clips to a person’s fingertips and measures heart rate and blood oxygen levels. Research has shown that sudden death in epilepsy patients may be the result significant drops in blood oxygen levels. Still, Mike said, the device was impractical.
Then they found a product based out of Finland called the Emfit Movement Monitor. Widely used as a seizure detection device in Europe, it contains a bed sensor, which is placed under the mattress, accompanied by a bed-side monitor. In the event that a person exhibits rapid movements over a period of time, the sensor would trigger a notification. More importantly, it also detected light movements, making it useable for children.
The foundation instituted a device subsidy program for families who could not afford to pay for such devices. Presently, insurance coverage on these devices is lackluster, since there isn’t enough research that concludes the devices’ effectiveness. Many families must pay out of pocket for the devices. After an application and interview process, the foundation would offer to pay for 100 percent of the device for those families. In their first year, it subsidized 19 devices, each device with an average cost of roughly $700.
In early 2011, the Stantons heard about a dance marathon put on by District 219, which consists of Niles West and Niles North high schools. They applied to be one of their beneficiaries and became one of the five considerations. But the foundation was rejected. A teacher at the one of the high schools told the Stantons about a dance marathon just next door, in Evanston, at Northwestern. They hadn’t known much about it and applied to be a beneficiary for 2012. The application, in Mike’s view, was fairly free-form with open response questions. He wanted to write it as a narrative, so over the course of a few months, Mike produced Danny’s story, in an application, in roughly 150 total pages.
NUDM asked the foundation back for a final interview as one of the final two. But Mike’s efforts weren’t enough to make up for the organization's relative youth. They were rejected again.
Over the next year, Tom, the executive director of the foundation, spearheaded business and lobbying efforts. The foundation grew faster in size and scope than the family had anticipated. As the foundation flourished, so did its donor base. In 2011, 56 families benefited from the devices. The next year, the foundation tested out a new device for the families, and the number leaped to 80 families.
But the Stanton family struggled with their own hardships. Mike took time off from work and a step back from operations to focus on the day-to-day aspects of family life. Not to mention it had been a period of mourning, of grief, an emotional hangover in the aftermath of Danny’s death. The daily grind – the appearances, the lobbying, the fundraising – became a burden on the Stantons at home. With each event, the family had to relive the darkest moment in their lives.
In 2012, the Stanton family struggled with whether or not to reapply to be the NUDM benificiary. With stress at home affecting their lives, Mike took a step back from the application process. Tom felt Mike needed more time to grieve. “No one can escape that. It’s a lifelong process when you lose a child,” he said.
Instead, Tom looked over the application, edited it and updated it with what the foundation had accomplished since the previous year. Mariann switched roles with her husband and became more involved in the process. Then, the foundation was invited for a final interview. At the end of the interview, Tom and Mariann were asked if the Danny Did foundation wanted to be this year’s NUDM beneficiary.
“I was floored,” Mike said. "I was thinking of Danny. My God, this kid had done this. He has motivated people to work on his behalf. The foundation is, to a great extent, Danny's continued presence in the world and it will affect the world in a positive way the same way Danny would have had he still been with us. His life, his presence, is still with us.”
***
On March 10, under the dim, multicolored lights, the faces of dancers, young and old, were doused with sweat and exhaustion. Back stage, Mike stood alongside Mariann, waiting to see how much NUDM raised. In the front row among the dancers, Tom stood with his fiancé. He had not known when the DM co-chairs and the finance committee members were set to reveal the amount raised. “Fix You” by Coldplay echoed in the background, painting the portrait of an anticipatory moment – the grand reveal. As the co-chairs lauded the dancers and everyone involved, Tom’s heart raced. One by one, the committee members approached the purple backdrop and revealed the numbers that would, in time, like the hostess of Jeopardy, seal their beneficiaries’ fate. The last six digits came first.
2, 3, 6, 4, 1, 2.
Then, on the final panel, three numbers were revealed.
1. 2. 1.
The crowd’s roar could be heard from Louis Hall. NUDM raised a total of $1,214,632 this year, the most money raised in in its 39-year history. The Danny Did foundation received a check for $741,394.10, the most money raised for a single beneficiary and the largest gift the foundation had ever received.
Mike, in tears, was embraced by a torrent of white shirts on stage. Dancers cried out in relief and in joy. Their 30 hours of dancing paid off, and it was all because of Danny.
“It’s pretty surreal,” Tom said later. “In [Mike's and Mariann’s] hearts, it was a moment of reflection and loss for Danny, that he wasn't there to experience it, that it was all necessary in the first place. There's always that joy, and that feeling of gosh I wish we didn't have to do it in the first place.”
Though the foundation will not receive their share of the proceeds until roughly June, it plans to use the money to expand the group’s influence in three parts. First, the foundation plans to expand its epilepsy and SUDEP awareness program through education programs in the form of videos, public service announcements and social media. It also hopes to expand its device subsidy program. Currently, there are roughly 200 devices in 40 states. Finally, the foundation is working with Northwestern professor Stephan Schuele to create SUDEP.net, an online network where neurologists can contribute research on SUDEP in a secure way. Tom was recently in Springfield to work with lawmakers and coroners to pass a bill in Illinois dealing with medical reporting procedures.
For Mike, however, the high he felt that weekend, like the one he feels at other events, came crashing down. He misses his son – his voice, his fascination with Curious George, his compassion. “I long for Danny and I continue to be ravaged by his loss and maddened at how he died,” he wrote in an email recently. “What keeps me going is Mary Grace, Johnny, Tommy ... and the thought, or the hope, or the fantasy that one day I will feel something inside of my heart that was sucked out when Danny died. I just can't ride that high, though, at all times.”
Mike carries on, supporting the foundation, with the legacy left by his son. The night of the reveal, he felt the joy and exhileration from the crowd of supporters. Now, like the rest of the family, he continues to grieve. Still, Mike dreams of Danny standing on second step the staircase at home, wrapping his arms around Mike's waist until Mike picked him up. Then, he would wrap his arms around Mike's neck, tuck them at his chest and nuzzle his head under his father's neck, the way he always did.