Angie Nieters holds a sign honoring her daughter, Jami, who died in 2019 from SUDEP. (Kentucky Lantern photo by Sarah Ladd)
FRANKFORT — Angie Nieters lost her 14-year-old daughter, Jami Smith, in September 2019 quite suddenly.
“After 45 minutes, we went in there to check on her and she was unresponsive,” Nieters told lawmakers through tears.
Her daughter’s death from sudden unexpected death of someone with epilepsy — called SUDEP — led Nieters to start a support group for families facing similar grief.
She’s now also working with Rep. Jason Nemes, R-Middletown, to pass a bill this session named after her daughter.
Jami’s Law, or House Bill 166, would require that autopsies determine, at a family member’s request, if a death is related to epilepsy and that the information be included on the death certificate. The bill passed unanimously out of committee and can head to the full House for a vote.
If the autopsy is consistent with SUDEP, HB166 would require death certificate copies be forwarded to the North American SUDEP 22 Registry at the Langone Medical Center at New York University within 30 days. Kentucky would become the fifth state to have such a requirement, Nemes said.
“The SUDEP registry is a collaborative effort to collect clinical information, autopsies, family interviews and other information used to study causes and risk factors that lead to SUDEP,” Nemes explained to his colleagues. “We need to do our part to help answer those questions of how prevalent (SUDEP) actually is.”
Centers for Disease Control and Prevention data shows Kentucky has about 50,000 cases of active epilepsy.
“No parent wants their child’s death to be a statistic,” said Nieters, of Crestwood. “But I am here asking for just that. I want Jami’s death to be part of the statistics being collected by the national registry so that there is good data for research.”
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