Dear Members of the Joint Committee on Education:
My name is Ezra Chan and I live in Cambridge and am a graduate student at Harvard Medical School.
I am here to urge your support for the Seizure Safe Schools Act, Bills H635 and S422.
My little brother is now 21 years old and finishing his sophomore year of college. He has lived with epilepsy since he was 4 years old. Since his diagnosis, he has had to take daily medication each morning and evening throughout his childhood. In 2017, when medication was not enough to control his seizures, he had to undergo a second neurosurgical operation to reduce the frequency and severity of his seizure episodes.
My brother is very active and loves to spend time outside. As kids we would spend our summers going to the rivers to swim and fishing at a dock close to our home. However, each of these activities required vigilance on the part of our family or his friends. A seizure can happen unexpectedly and with fatal consequences, either from falling or in and of itself. My family has developed a regular habit of ensuring that he not only has taken his daily medication, but that one of us has rescue medication on hand in case a seizure becomes life-threatening.
When my brother was in high school, my parents were concerned about him having a seizure and not having anyone at school who understood his medical history. He has since worn a band on his wrist to inform both students and school staff of his condition, even now that he has entered university. However, the reality is that most people are unfamiliar with epilepsy and do not know how to respond to a seizure, even if they are aware of a student’s medical history.
Would others notice if he went to the bathroom and didn’t come back because of a seizure emergency? Would a teacher know that a seizure can become deadly after only 5 minutes of time? If you have never responded to someone having a seizure, those minutes pass astonishingly quickly.
Passing the Seizure Safe Schools Act would equip school personnel with the necessary information to keep students with epilepsy safe.This legislation will make sure that children with epilepsy are supported and protected like any other child. On behalf of the more than 8,400 students living with epilepsy in Massachusetts, I ask that you please pass the Seizure Safe Schools Act.
Ezra Chan