Loyola's War on the Shore Raises Money to Fight Epilepsy

Danny did.

The phrase is simple, yet all-encompassing. But it should never have been written. Not for a young child. Not for someone so beloved.

In December 2009, four-year-old Danny Stanton passed away in his sleep, suffering from a rare medical condition called Sudden Unexplained Death in Epilepsy (SUDEP).

Danny's parents, Mike and Mariann Stanton, knew he suffered from epilepsy, but didn’t realize the seizures could be sudden, and even fatal.

“We didn’t know about it. We were treating Danny for a seizure disorder and we thought everything was in control,” Mike told Patch. “But we found out that it’s not.”

In response, Loyola Academy is doing its part to raise awareness about SUDEP.

On Saturday the Ramblers hosted their first War on the Shore boys basketball competition. The event showcased three games, with each matchup pitting a team from the North Shore against a team from Chicago. Evanston, New Trier, St. Ignatius, Mount Carmel and St. Patrick’s joined Loyola in the first annual event.

DANNY DID STAND OUT

Mike said Danny suffered only five seizures that the family was aware of, all while he was sleeping.

The disease didn’t affect his day-to-day life. In fact, Danny was a gifted athlete. He learned to ride a bike when he was three-years-old and could hit from both sides of the plate in baseball.

Danny stood out—even among his three siblings—for his unselfishness. When the recent snowstorm hit Chicago, Mike didn’t have help to shovel snow outside the family’s house. Danny would’ve been there, Mike said.

“If I’m working around the house, raking leaves or building a book shelf, Danny’s the one who would be there with me," Mike said.

“That’s one of the things I miss most about him.”

DANNY DID HELP OTHERS

Shortly after Danny’s death, the Stantons set out to follow the shining example their son had portrayed.

Taking the name from the last line of Danny’s obituary, they started the Danny Did Foundation to help prevent deaths caused by seizures. Upwards of 50,000 people die from seizures every year; some of them are as young as Danny.

In working to fight against epilepsy—specifically SUDEP—Danny Did has two areas of focus: technology and awareness. After the foundation was started, Mike started looking for devices that can notify others when a person with epilepsy has a seizure while sleeping.

“Our thought was there has to be something out there that can alert [you] to a seizure so that you have a chance to address it and then go from there,” Mike said. “What we’re trying to do is bring that information to people and let them know here are some things you can try.”

One company they found was EMFIT, whose device uses sensors under a bed mattress to detect muscle spasms, such as those associated with seizures. Danny Did has now subsidized 27 of these units to families in 19 different states.

EMFIT’s device is not FDA-approved, but getting data to support these instruments is another component the foundation wants to facilitate. Studies were recently started in major Chicago-area hospitals, including Rush, Children’s Memorial and Northwestern.

But Mike and Mariann also talk to doctors, trying to foster communication between medical professionals, and the families of those affected by epilepsy. Along with the Epilepsy Foundation of Greater Chicago, the Danny Did co-wrote a pamphlet entitled “Seizure Safety.” The four-page booklet—which has been distributed to hospitals and doctors across the nation—outlines safety tips, challenges and epilepsy facts for families dealing with the disease for the first time.

“We want to help [doctors] let people know that this can occur, which is very difficult,” Mike said. “We have found ourselves in a position where we can act as a buffer. But that information has to be out there; it’s only fair.”

DANNY DID LOVE SPORTS

Last summer Loyola Academy head basketball coach started organizing the idea of an annual basketball shootout for charity: the Danny Did Foundation seemed like a perfect fit.

Tom Stanton, Mike’s brother and Executive Director of the Danny Did Foundation, was in his second year as an assistant coach for the Ramblers. The team knew all about the Stanton family’s fight against epilepsy. Last year as part of the foundation’s Buzz Cuts for Danny fundraiser, the entire Rambler basketball team sported Danny’s trademark haircut for their playoff run, something they plan to do again this season.

“He’s family and we’re doing it for [Coach Stanton],” Loyola senior forward Michael Lang said. “Everyone in the community has realized how big of an issue this is and all the support goes out to him and his family.”

The event served as another fundraiser for Danny Did, which received a portion of the proceeds from ticket sales and a 50/50 raffle. They also set up a table selling apparel with the Danny Did logo—everything from tee-shirts to headbands to sweatshirts.

“Any time you can combine the great sport of high school basketball with a charity it’s a great thing,” said New Trier coach Scott Fricke, whose team also raises money for cancer and diabetes research in their two matchups against Evanston.

With sizeable attendance figures and a large quantity of raffle tickets sold, Danny Did raised $2,200 at the War on the Shore.

“It was a great first year,” Livatino said. “It meant a lot -- besides it being six really good basketball teams – because it benefitted a great cause."

But spreading awareness was perhaps the biggest acheivement for Danny Did this weekend. They passed out pamphlets, conversed with those around the gym and hung a banner above the stands at half court.

In Loyola’s matchup with St. Patrick’s High School, both teams and the game officials wore custom warm-up shirts. They read “Danny Did Hoops, SO CAN WE!”

“Any way we can get the word out to people we might not know, whether it’s from Mt. Carmel, Ignatius, Evanston, New Trier,” Tom said. “These are kids that we wouldn’t otherwise engage and you have to reach out to the next network of people.”

DANNY CONTINUES TO DO

The never-ending battle against epilepsy continues on for the Danny Did Foundation. Their list of events is extensive. They will host the Danny Did Love Buzz Cuts event again in May and join with Misericordia for the 2nd annual Evening of Hearts and Hugs. Team Danny Did will even be running the Chicago Marathon in October.

All of this to garner even more funds and spread awareness of epilepsy to anyone who will listen.

To make sure the verb will never again be a “did,” but instead a “does” for every young child who suffers from the disease that took Danny’s life prematurely.

“Why we’re so motivated is because of him and the way he lived his life,” Mike said. “That’s what keeps us going.”

For more information about SUDEP and the Danny Did foundation, visit www.dannydid.org