If a Maryland bill called Brynleigh’s Act becomes law, the state will join five others — all of which have passed “seizure safe schools” measures — in making sure every school is equipped with the tools necessary to provide a safe learning environment for students with epilepsy.
The law would require so-called seizure action plans to be on file for every student diagnosed with epilepsy or a seizure disorder, such as Dravet syndrome. It also would require that administrators, faculty, and staff at each school are educated about epilepsy and the proper first aid response for seizures.
Legislators in Maryland recently introduced Brynleigh’s Act (SB225 and HB370), which would ensure that school personnel are trained to recognize and properly respond to students who experience seizures. The bill is in the state’s House Ways & Means and Environmental Affairs committees.
The bill was named for 6-year-old Brynleigh Shillinger, who has epilepsy triggered by a rare multisystem genetic disorder that causes benign tumors.
Beginning with the 2022-2023 school year, Brynleigh’s Act would require each primary and secondary school in Maryland to have two employees trained to recognize signs and symptoms of seizures, to administer first aid, and to be able to give or help to give seizure medication. These personnel also would be trained in performing manual vagus nerve stimulation, which can prevent seizures by sending mild pulses of electrical energy to the brain via the vagus nerve, which runs from the brain through the face and thorax to the abdomen.
Seizure action plans, with details as to an individual child’s specific medical condition, also would be required for every student with epilepsy or a seizure disorder.
“As a parent of a child with epilepsy, I can attest to the critical importance and urgent need for this bill,” Lauren Shillinger, Brynleigh’s mother, said in a press release.
“This legislation will make a huge difference in the life of not just my child, who will have many years in public school, but all other Maryland students who are affected by seizures,” Shillinger said.
In Maryland, about 59,900 people live with epilepsy, 7,900 of them children. Dravet syndrome is a rare and severe type of epilepsy — a central nervous system disorder — that affects about one in every 15,700 individuals in the U.S.
“We were anxious when our daughter started preschool since there is no required seizure training currently in school and not all school personnel know how to recognize a seizure and administer seizure first aid,” Shillinger said. “This bill’s trainings, tools, and knowledge can save a child’s life.”
A seizure, which is a symptom of epilepsy and some other conditions, is a burst of uncontrolled electrical activity between brain cells. It causes temporary abnormalities in muscle tone or movements, behaviors, sensations, or states of awareness. About one in 10 people will have a seizure in their lifetime.
“All students deserve to be safe and protected in their school,” said Ronald Young, a Maryland senator from Frederick County who sponsored the proposed legislation.
“Brynleigh’s Act helps ensure that students with seizure disorders have the resources they need to go to school without fear for their safety,” Young said.
To date, five states — Kentucky, Indiana, Texas, New Jersey, and Illinois — have passed seizure safe schools legislation, and several other states have introduced similar bills. The legislation is an Epilepsy Foundation initiative aimed at ensuring there are seizure-safe schools in all states. Bill components will vary by state.
“We are fighting for everyone impacted by seizures,” said Laura Weidner, vice president of government relations and advocacy at the Epilepsy Foundation.
“It’s important that schools are equipped with the tools necessary to provide a safe and enriching environment for students with seizures and those who may develop them,” said Weidner, a lawyer. “Brynleigh’s Act raises awareness and implements a uniform response standard across the state, ensuring that students have access to the care they need to reach their full potential.”
For more information on the national effort, write to the foundation’s advocacy team at [email protected].
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