Ben Herman

Good Afternoon:

My name is Ben Herman and my wife and I live in Milton with our two sons Ollie and Teddy.

In January of 2022, at the age of 15 months, Teddy was diagnosed with epilepsy.

These past 19 months have kept us busy with EEG’s, MRI’s, visits to Boston Children’s Hospital and experimenting with four different medications. 

It has been increasingly difficult to convince a very active toddler to take six capsules and two liquid syringes a day.

One thing that my wife and I did not anticipate was the stigma surrounding epilepsy. Despite all of our friends and family being incredibly supportive, there was still a sense of confusion and fear.

We were faced first hand with the stigma when we began to look at pre-schools for Teddy. The first pre-school that we spoke with, when we explained that Teddy had epilepsy, they said that they had to ask the teachers first how they felt and if they were comfortable with taking care of a children with epilepsy. We then had a meeting at the school, where we sat down with the teachers and explained in great detail Teddy’s epilepsy and how to handle any emergencies.

This spring, we tried to send Teddy to his older brother’s school for next fall. After interviewing at the school, we received a call that they thought Teddy was not ready to start school there. After we pressed them, they had concerns about his epilepsy. They had never had any students with epilepsy before and they were unsure that they could give him the proper support. They explained that they couldn’t afford to have a private aide in the classroom with Teddy. We let them know that Teddy would not need an aide at all or any special services. After conferring with the teachers and the EEC, they let him do another interview. In the end, they still said he was not ready and would have to stay at his current school. 

Teddy is not even 3 years old and these experiences are a sobering realization for us that when it comes to Teddy’s education, we will never have an easy experience. 

This seizure safe legislation will make sure that children with epilepsy are supported and protected and will have the same school experience as every child.