Erica Rogers Jensen

Dear Chairs Lewis and Garlick and Members of the Joint Committee on Education: 

My name is Erica Rogers Jensen and I live in Somerville and teach public elementary school in Cambridge. 

I am here to urge your support for House Bill 533. 

I am the mother of Jude who is now 6 years old and heading to first grade in the fall. When Jude was 3 years old, he was diagnosed with Doose Syndrome, a rare epilepsy type that causes many seizure types. Jude’s journey with epilepsy has had many challenges. He had his first seizure in the Fall of 2020, so our early experiences navigating emergency rooms, hospital stays and doctor’s appointments were complicated by Covid restrictions and often meant that only one adult was allowed to be with him, even at the scariest times. In the 6 months following his first seizure, Jude had more than a dozen hospital admissions, dozens of ambulance rides, and hundreds of seizures. I learned quickly that seizures can look a lot of different ways. 

Many nights a week, I would be woken up from sleep to Jude having a tonic clonic seizure, and I’d have to time it and administer rescue medication and call 911 if he didn’t stop seizing in minutes. During the daytime, he would have absence seizures and stare into space and lose awareness. He wore a helmet for many months because “drop” seizures would happen throughout the day, where his little body would lose all control and he’d fall to the ground, or worse, fall off of the top of the play structure, or fall down the stairs. These seizures happen without warning, and while they only last a moment, the impact can be devastating. Jude has been on several medications, with heavy side effects and only some success. 

For the last two years, he has been on a medical diet and has enjoyed some seizure freedom as a result, but has to endure the severe restrictions on what and when he can eat. Despite all of this, Jude is the best kid I know. He is an avid reader and video “gamer.” He loves his friends and can’t wait to get to school every day to hug them. He is spending his summer fishing, learning to swim, and giving away lemonade in front of our house. He can’t wait to go to first grade in the fall. While his medical situation is more stable now, those really difficult months will be in the front of my mind every single time I send him to school. Every time he is not in my care, I am thinking about whether the teachers he is with know what to do if he had a seizure. 

Would they recognize what a drop seizure looks like? 

Would they notice if he went to the bathroom alone and didn’t come back because of a seizure? 

Do they understand how fast a minute goes by when trying to find someone to administer his rescue medication to save his life? 

Passing House Bill 533 is important to me as a parent and as a teacher. Before this personal experience with Jude’s epilepsy, I didn’t know anything about it. I was vastly unprepared to care for my students in a seizure emergency and I didn’t even know what I didn’t know. When I send my child to school, I am entrusting them to care for him to the best of their ability, and I do the same for my students. This bill would ensure that the school personnel taking care of my son have the information they need to do it well, so I, and so many other parents of children with epilepsy in Massachusetts, can worry a little bit less. 

On behalf of Jude and the more than 8,400 other students living with epilepsy in Massachusetts I ask that you please support House Bill 533. 

Erica Rogers Jensen