In 2012, Lisa Riley’s 24-year-old son, Jordan Buisman, died from Sudden Unexpected Death in Epilepsy (SUDEP).

 

Now Riley, who lives in Clear Lake, wants to help people with epilepsy and their families learn more about the condition.

 

When Jordan was just seven months old he had a febrile seizure. “But after a week in the hospital, we never found out why,” says Riley.

 

At age two, Jordan  had a seizure that lasted 20 minutes, but then went years without another episode.

 

Seizures returned years later when Jordan was in the Marine Corps. Jordan, who was a video cameraman for the Marines, called home one day to tell his mother.

 

“He went to Norfolk, VA to tape the Battle of the Bands. After it was done, he was with the other photographers in a van when he had a grand mal seizure,” says Lisa.

 

During a grand mal seizure, also known as a generalized tonic-clonic seizure, a person will experience a loss of consciousness and violent muscle contractions. It’s caused by abnormal electrical activity throughout the brain. Most of the time grand mal seizure is caused by epilepsy. but can be triggered by other health problems, such as extremely low blood sugar, high fever or a stroke.

 

Many people who have a grand mal seizure will never have another one. But others may need daily medication to prevent future seizures.

 

After his seizure, Jordan was taken to Walter Reid Hospital and given an MRI.

 

“The MRI showed he had scar tissue in his left temporal lobe,” says Lisa. “That indicated he had epilepsy.”

 

Jordan was given medications for epilepsy. Although he had other seizures, he remained in the Marines. Eventually, he was medically retired with a 40% disability, which meant he was able to keep his health insurance, says Lisa.

 

“He came home and was doing great. He enrolled at St. Cloud State and rented an apartment with two roommates,” says Lisa. “He rode his bike to college every day. He loved going to college.”

 

But 16 months later, at the end of Sept. 2012, he had another seizure.

 

“When you’re taking medication and have a seizure, it’s known as a breakthrough seizure,” says Lisa. “Maybe the medication isn’t working anymore or maybe you gained weight and the medication isn’t enough anymore.”

 

Jordan was taken to the emergency room and was advised to go to the VA Hospital in St. Cloud. The doctor he was supposed to see wasn’t available. On Oct. 10, he saw another doctor and was told he should see a neurologist at the Minneapolis VA Hospital.

 

“He got a letter in the mail,” says Lisa. “The appointment date was Dec. 21.”

 

Jordan never made it to that appointment. On Nov. 26, he had another seizure and died. His roommates found him slumped over his computer.

 

“When they came to tell us Jordan died, my first thought was he had a seizure and hit his head,” says Lisa. 

 

Because Jordan passed away when he was alone, they did an autopsy. The coroner’s report found nothing abnormal.

 

“He didn’t have a heart attack or an enlarged heart - nothing physically they could find that would cause him to die,” says Lisa. “That is a really good indication of SUDEP.”

 

Lisa says perfectly normal people have died from SUDEP without warning.

 

“Twenty is the median age. They’re doing research on it and still aren’t 100% sure what causes it,” says Lisa. “There’s speculation that it has something to do with the brain stem.”

 

After Jordan’s death, Lisa was devastated.

 

“When your child passes away, you really don’t function. You just live, and some people can’t even do that,” says Lisa.

 

But she still had a 10-year old son to care for, and a daughter and grandson.

 

“People were telling me I had lots of people depending on me,” she says. “That helped me push through the grief.”

 

Almost a year later, friends asked Lisa if she was going to do anything for the anniversary of Jordan’s death.

 

“I had an idea about doing a public service announcement on SUDEP,” she says. “I thought, if I don’t know much about it, there’s probably a lot of people out there who have no clue about SUDEP.”

 

Lisa and her daughter flew to the east coast and some of Jordan’s videographer friends filmed the piece, which was put on Youtube.

 

A year later she wanted to do more. She started looking on Facebook and found a site on the Epilepsy Foundation of Kentuckiana that had a program for veterans.

 

She contacted the program’s coordinator, John Mustain and sent him her Youtube video. He started using it at his presentations.

 

Then she went to Kentucky to see him last February. He gave her information she could use for training.

 

When Lisa returned to Minnesota, she started putting together her own idea. She called Vicki Kopplin, the director of the Epilepsy Foundation of MN and presented her with her proposal, called MOVES - Minnesota Outreach for Veterans with Epilepsy and Seizures.

 

She got a call the next day.

 

“I have 100% backing from the Epilepsy Foundation. It’s all volunteer,” says Lisa. “They set me up with business cards  and projector to do Powerpoints. I try to tell a little bit of Jordan’s story, but I really want to focus on people understanding epilepsy and SUDEP.

 

Lisa sent letters to about 30 American Legions and VFWs. She has done a few presentations but hasn’t had a big response so far. She’d like to have more venues to get her message to the public.”

 

“My purpose is to get out there and tell people what SUDEP is and things you can do to increase your odds, like taking medications regularly and on time. Also avoiding stress, getting good sleep, avoiding alcohol, drugs and smoking,” she says. “I’m doing this because I want to help other people with these situations. It’s part of my healing process.”

 

Lisa is currently making arrangements to speak at the Clearwater American Legion. No date has ben set so far.

 

Lisa can be contacted at 651-287-2328 or lriley@efmn.org.