LOUISVILLE, Ky. — A Crestwood mother is pushing for change for families with loved ones living with epilepsy, wanting to raise awareness for a rare but deadly complication of the condition.
SUDEP (sudden unexpected death in epilepsy) only happens in about one out of every 1,000 cases, according to doctors.
Angie Nieters lost her daughter, Jami Autumn Smith, to SUDEP in September of 2019, at the age of 14.
Jami had refractory epilepsy, battling disabling seizures her whole life, including on that heartbreaking afternoon.
"She smiled and went to her room to take a nap. 45 minutes later, we knocked on the door and there was no response," Nieters told WHAS11. "I didn't realize that she was high risk."
SUDEP isn't well understood, and researchers don't know the exact cause.
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But Dr. Darren Farber, neurologist with Norton Children's Hospital, said there are correlations to note.
"Patients who tend to have refractory seizures, or who have more difficult-to-control seizures, are most at risk for having SUDEP," Farber said. "A lot of times it's not really clear, which is why those numbers can vary."
Because it's not a household term, there's concern the death totals could actually be higher. So, there's an effort to get the word out.
In honor of her daughter, Nieters is advocating for House Bill 166, known as Jami's Law. It would have autopsies in the state look into whether someone's death directly results from a seizure or epilepsy, at the request of an immediate family member.
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If the findings are consistent with SUDEP, the coroner would indicate on the death certificate that it's the cause or suspected cause.
It could be a breakthrough for collecting better data, and possibly, getting answers.
"The more research that can be done to potentially save more lives, [the better]," Nieters said. "I want [Jami's] legacy to carry on because I know that's what she would have wanted."
That bill has passed the full Kentucky House, and if it does the same in the state Senate, it would go to the Governor's desk for signing.
The Epilepsy Foundation of Kentuckiana has a 24-7 helpline at 800-332-1000.
If you'd like to support Nieters in her effort, click here.
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