Four-year-old Danny Stanton (center) inspired the creation of the Danny Did Foundation where DePaul's R.J. Curington worked over the summer.
Aug. 6, 2015
CHICAGO -- R.J. Curington never imagined how the life of a disarming 4-year-old boy with a buzz cut and hugs for everyone could turn a summer internship into a cherished life lesson.
What the junior guard on DePaul's basketball team discovered working a summer internship at the Danny Did Foundation is the heart and soul of a passionate advocacy spreading awareness about a particularly frightening medical condition known as Sudden Unexplained Death in Epilepsy (SUDEP).
The life and times of Danny Stanton is both heartwarming and tragic, and his story added so much meaning to Curington, teammates Frederick Scott and Develle Phillips and staff members Kevin Edwards and Edwind McGhee spending time in late July at the Danny Did Foundation's basketball camp for kids with epilepsy at Proviso East.
A sports-crazy, affectionately scrappy kid nicknamed "Little Toughie" by his grandmother, Danny had his first seizure at the age of two.
"His eyes rolled back and he shook," wrote his father, Mike Stanton, in a memorial to his son. "We did not know what was happening. We dialed 911 then rushed him to our next-door neighbor, who is a paramedic. Danny seized for almost 10 minutes.
"On that night, we had a battery of tests done at Children's Memorial Hospital. There was no known reason or cause found for Danny's seizure. No injury, no trigger. We were told that sometimes seizures in children have no known cause and that kids often outgrow them. The experience was terrifying."
Almost as frightening was the terror of the unknown. This was 2007 and Mike and Mariann Stanton left the hospital that night without any information about SUDEP. A second seizure a month later resulted in another battery of tests along with medication.
Mike wrote that the neurologist's diagnosis was childhood seizure disorder and there was still no mention of epilepsy or SUDEP.
"We were told he'll outgrow it, many kids experience this, we don't know why it happens, maybe it's `his normal.'"
Other than the times he slept in his parents' bed so they could monitor his condition---and they caught two more seizures---Danny remained true to his shining personality.
"Danny and Johnny were best friends, and Danny got into sports because of his older brother Johnny," said Danny's uncle Tom Stanton, the Danny Did Foundation executive director. "He was the little brother who was always hanging around and playing ball with the older kids. He was a dynamic, outgoing kid running up and down the block.
"He was the mayor of Edgewood and brought a lot of life to the block on the Northwest Side. He would high-five a 60-year-old man as easily as playing a game with a kid his own age."
Curington began to appreciate Danny's unique qualities during the internship.
"It seems like he was such a special kid," Curington said. "Even though he was so young, he showed you how much love and affection could come from someone.
"People who were uncomfortable showing their affection wouldn't hesitate to give Danny a hug. He had a special impact on everyone from kids his own age to older people.
"Tom Stanton and Mary Duffy, a close friend of Danny's family, talk about Danny all the time---the kind of kid he was and how the family was always with him."
Here's an excerpt from an Associated Press story:
"Danny was buddies with Mary's son, Charlie, the same age but extremely shy. During one of the regular kickball games outside the Stanton home, Danny noticed Charlie on the sidelines, grabbed him by the hand and brought him into the house.
"Danny thought, 'Well, he doesn't want to play sports, here's all my action figures,' and laid them all out in front of him," Duffy recalled. "Danny created that environment for him. Danny figured it out."
"His charity didn't end once he left the ball field, or a neighbor's yard. He seemed to sense when people around him needed a hand, even the grown-ups. Danny loved to help next-door neighbor Betty Lazzara carry in her groceries."
"I'd always try to give him a light bag," Betty said, "but Danny would say, 'I can carry that gallon of milk' and would lug it into her house. He knew a treat from Lazzara's snack drawer would be waiting---fruit roll-ups or Gushers were his favorites---and Danny always asked to take home enough for his brothers and older sister, too."
A seizure on Dec. 12, 2009 took Danny's life---a life that ended with a hug.
"That's just how he expressed his life, and how he gave it," Mike Stanton told the AP. "How he just let you in was so beautiful."
The AP story continued: "So when Danny died of a seizure 14 days before Christmas---after frantic attempts by his parents, neighbors, paramedics and doctors to revive him, after all the medical tubes were disconnected---Danny's dad lay down on the hospital bed. And he tightly hugged his little boy in return, as his body grew colder and colder.
"I kind of lost track of time," Stanton said. "I could have laid there with him forever."
The foundation was created a month later and gets its name from the final words of an obituary written by his dad: "Please go and enjoy your life. Danny did."
Curington has been caught up in the foundation's work which in its first year put up billboards, created more than 8,000 SUDEP pamphlets for hospitals, doctors' offices and families, held fundraising events and drew a large following on Facebook. DePaul women's basketball coach Doug Bruno is a member of the foundation's board of directors.
"Every fundraising event at the foundation has been fun and exciting," Curington said. "When I applied for the internship, I had no clue what this entailed. I help set up for events and come up with different plans for future events. I learned a lot about all the preparation that goes into a big fundraiser.
"The foundation is an ideal setting for a nonprofit organization. With all the fundraising, an excellent website, the SUDEP monitoring devices and all the other clothing and accessories, they really hook it up. You would think this is some kind of global foundation."
Tom Stanton said Danny Did's fundraising helps families across 48 states and seven countries gain access to devices and technology that can monitor seizure activity, especially when someone is asleep.
"Most of the time, people who have died are found the next morning in bed," Tom Stanton said. "My brother Mike and and his wife Mariann had never heard of monitoring devices, and they hadn't been informed that these resources can help complement other forms of treatment. When we started the foundation, awareness among parents of kids with epilepsy about the risk of SUDEP was extremely low."
It was Curington who suggested adding a little flair to the annual Bounce Out the Stigma Basketball Camp run in conjunction with the Epilepsy Foundation of Greater Chicago.
"I talked to Tom about the annual event and said why not bring in some of my teammates and members of our staff in to pump up the camp?" Curington said. "He was really excited. He is a big fan of DePaul and even played noonball a couple of times."
Stanton said the camp demonstrates that someone with epilepsy is just like any other kid participating in sports, clubs or other activities and no one has to be defined by epilepsy. The camp seeks to break down the stigma and educate kids and their parents about how to respond when there is a seizure. He said if a seizure occurs during the camp, there's a nurse on hand to take care of it, and the camp moves on.
"R.J. brought his teammates and the campers really loved it and looked up to them," Tom Stanton said. "You could tell by the looks on their faces, the kids were in awe from the moment they walked in. It was their size, and they had an aura about them.
"The DePaul players jumped right in and never hesitated interacting with the kids. R.J. is such a great role model and so personable---he makes the kids feel comfortable. I heard from so many parents about how the players represented themselves so well. That really made it a special day for the kids.
"There was this girl Gabby who was too little to shoot a basketball. Develle Phillips lifted her up and she put it in the basket. Our kids will remember this day for a long time. DePaul made a bunch of new basketball fans among parents and children---no doubt about that."
And Curington developed some newfound respect for his fellow Blue Demons.
"I talked to some of my teammates, and they were surprised and happy to work with the kids," Curington said. "When we first walked into the gym, the kids were really excited. They thought we were superstars or something. We showed them how to do stuff on the court.
"When I started hitting a bunch of three-pointers, there were all these `ooohs' and' aaahs' from the kids. It was funny. It was like we were NBA players to them.
"The guys had no idea what would happen. We talked about the experience afterwards. They were describing each kid and their characteristics, and you couldn't tell they had epilepsy. They were just regular kids and part of the camp.
"What my teammates did---these guys are awesome. They really cared about it, and it made me proud to be their teammate."