I am writing regarding Senate Bill 433, the Seizure Safe Act. Before expressing the importance of this legislation, I would like to share my family’s personal experience with epilepsy.
My husband, my daughter, and I all have epilepsy. My husband attended school in New Hampshire and experienced multiple seizures during the school day as a child. As parents living with epilepsy, we believed we were well prepared to support our child while navigating the education system.
Our daughter began kindergarten in the local school district during the 2024–2025 school year. Prior to the start of school, we met with the school nurse and staff to explain her medical needs and review the seizure action plan provided by her neurologist. From the beginning, we encountered resistance and were told the school was not equipped to meet her needs.
Our daughter’s diagnosis is complex. She has a rare genetic mutation, SCN1A, which causes prolonged seizures that often progress to status epilepticus—seizures lasting longer than five minutes and requiring rescue medication to stop them.
In October 2024, our daughter experienced a seizure on the school playground. Staff were unsure what was happening until another child alerted a recess monitor that she was on the ground. The nurse was contacted via walkie-talkie and came outside carrying a ziplock bag containing medications for multiple students. No one was timing the seizure, so the staff were unsure how long it had lasted. Fortunately, the seizure stopped on its own. Rescue medication was not administered because staff were uncertain how to respond. The recess monitor had not been trained to recognize seizure types or to know when and how to administer rescue medication.
Although the school had been provided with our daughter’s seizure action plan, it was not followed due to a lack of training and support. This incident resulted in numerous meetings, phone calls, and extensive coordination with the school.
Our greatest concern remains that there is only one nurse in the school, yet our daughter requires rescue medication within three minutes of seizure onset. Relying on a single nurse without comprehensive staff training is unrealistic and places both staff and students at risk of catastrophic outcomes, including death.
We have pursued both an Individualized Education Program (IEP) and a 504 Plan; however, these measures do not provide sufficient protection. We currently still only have a 504 Plan and have continually been denied an IEP based on other health impairments. Even when such plans are in place, schools continue to lack consistent, school-wide training for all staff.
The Seizure Safe Act would ensure that school personnel are prepared to respond appropriately during a seizure emergency and would significantly reduce delays in administering life-saving rescue medication.
I urge you to support and pass Senate Bill 433, the Seizure Safe Act. No child’s life should depend on chance, confusion, or the availability of a single nurse. This legislation would establish consistent, mandatory training for school staff and ensure timely access to life-saving rescue medication. Children with epilepsy deserve to attend school safely, and parents deserve confidence that schools are prepared to respond appropriately in an emergency. I ask you to act now to protect vulnerable students and prevent avoidable tragedies.