SUDEP law passes House

Robbinsville – Joel Crisp was just 24 years old when he suffered a fatal epileptic seizure in his sleep.

It took less than a year after his passing for his mother Donna to get a bill introduced at the state level, in hopes of preventing anyone else in her position from going through the unspeakable heartache she has endured since April 23, 2022.

Compelled during a local fundraiser to contact Rep. Karl Gillespie (R-Macon), Donna knew she could do so much more if she could simply get the Congressman to listen. She composed an email and pushed the “send” button.

Her phone rang two hours later. 

Today, House Bill 736 – Joel H. Crisp SUDEP Awareness Law – is a huge step in the right direction.

“Initially, Mrs. Crisp reached out to my office and spoke with my legislative assistant (Andrew Bailey) about her son, Joel, who lost his battle with epilepsy due to SUDEP,” Gillespie explained to The Graham Star, in a statement emailed May 22. “My legislative assistant shared with me her heartfelt story and we decided to draft a bill that would promote awareness of SUDEP, by disseminating the most accurate and evidenced-based information to our health care providers throughout the state.

“Wanting to ensure that the bill received broad, bipartisan support, the language of the bill underwent many changes over the several months we worked on it.”

The revisions paid off: H.B. 736 passed the North Carolina House of Representatives to the resounding tune of a 116-0 vote. Currently, the bill sits in the N.C. Senate and is waiting to be heard.

“The first thing I have to do is thank God, because He’s the one that blessed it,” Donna said in a Friday interview with The Star. “I didn’t know how it was going to turn out, but I was hoping it would do good.

“I just thought North Carolina should be one of the first states – it’s not (New York has already passed similar legislation) – and I didn’t want Joel to have died in vain. If I can help just one person with this, it’s worth everything I’ve done.”

The pain of losing her youngest child is still fresh to Donna.

“I’m broken-hearted because he died, but I can still look at his face and smile,” Donna admitted.

She has researched and worked tirelessly to bring awareness to SUDEP (Sudden Unexpected Death in Epilepsy). Recently, she held a local raffle to help bring the condition to everyone’s attention; the effort netted over $2,000 – $470.72 of which helped pay for an Exceptional Children’s class at Robbinsville High School to take a field trip to the Tennessee Aquarium in Chattanooga.

“They sent me cards, thanking me. That brought tears to my eyes,” Donna said.

The drawing was held April 23 – the first anniversary of Joel’s death. There is still $1,600 available for anyone who is battling epilepsy.

“My main focus is in Graham County, but so far, nobody has reached out,” Donna revealed. “If I see I’m not getting a response here, I may try to expand my help.”

Born July 18, 1997, Joel first suffered a seizure at the age of two. They continued until he was five, when Joel was able to enjoy a 6-year stint without another.

“When they came back, they came back with a vengeance,” Donna pointed out, noting that it was not unusual for Joel to suffer at least one seizure a week.

Donna said she was advised that she would never have to worry about one of Joel’s seizures proving fatal, so she was completely caught off-guard when they went in to wake him up and he was already cold to the touch.

“Joel had four neurologists in his life and I asked every one of them, point-blank, ‘Are the seizures something I have to worry about taking his life?’ They all told me it was a 1-in-a-million chance,” said Donna. “Every one of them said that.”

Beyond shaken and seeking answers, Donna immersed himself into research.

What she found was alarming.

SUDEP is not commonly discussed. In fact, the Centers for Disease Control and Prevention’s website clearly admits that “SUDEP is not well understood.” Even today, it is unclear what triggers death from an epileptic seizure, but speculation ranges from lengthy pauses in breathing to throwing a person’s heart rhythm off-beat.

The fatal seizures are believed to only last less than a minute, with most occurring while someone is asleep – as such, there is no eyewitness accounts of someone incurring SUDEP, but most are face-down when discovered. There is no connection to age or race, but it does seem to affect males more than females.

It is estimated that 1-in-1,000 who suffer from epileptic seizures will pass away from SUDEP; uncontrolled seizures – which Joel had – heighten the odds to 1-in-150.

“I’m hoping that people with epilepsy will hear about this and question their doctor, because they’re not going to volunteer anything,” Donna said. “Knowing about it would not have saved Joel, but it would have made me fight harder. I would have gotten him to an epileptologist, who is somebody that specializes in epilepsy. I did not know about that, either.”

In the immediate future, Donna hopes to organize meetings for anyone who is affected by epilepsy; as well as obtain a certification in epilepsy first aid, so she can train others on how to properly handle an episode when it occurs.

“Most people, when they see somebody having a seizure, they panic,” Donna said. “I did with Joel if someone else is around, but a lot of people leave them just laying on their back: you can’t do that. You have to turn them on their left side.”

H.B. 736 is short, sweet and to the point: it serves as a directive to the N.C. Department of Health and Human Services to collect data about SUDEP, and make it readily available to both doctors and legislative officials. The bill gives the state department an April 1, 2024 deadline to complete the task.

“Mrs. Crisp’s advocacy of the issue in memory of her son Joel is truly inspiring and I am honored to have introduced the Joel H. Crisp SUDEP Awareness Law,” Gillespie added.