Kate Morton

July 13, 2023

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

My name is Kate Morton and I live in Holliston, Massachusetts and I am here to urge your support for House Bill 533.

I am the mother of Jane who is 11 years old and has lived with epilepsy since she was 5.

Jane was 5 years old when she had her first seizure.  We were playing at a playground when she told me she was thirsty. I picked her up and then tried to hand her a water bottle. She didn’t take it. I looked at her to say, “Jane, here’s your water” but she was stiff, her eyes were locked in an upwards position, her lips were blue and she was totally unresponsive. I thought my daughter had just died in my arms. I screamed for help. I put her down on the ground and tried to clear her airway - the only thing I could think was that maybe she was choking on a woodchip from the playground. That was the only thing that could explain it in that moment. Nothing. I tried again and this time her teeth clamped down tightly on my finger. My finger was stuck in her mouth and I had a flashback to my 8th grade science class when we learned about seizures and seizure safety. We were told that when people are seizing they will clamp down tightly on anything placed in their mouth. I knew, then, that she was having a seizure. 

Since then Jane’s epilepsy story has taken many turns. After her first seizure we were told that she was unlikely to have another seizure but we were given a prescription for diastat “just in case.” About 10 days later Jane had a second seizure. She was laying on the floor with some friends when her back arched, her eyes locked upwards, she made gurgling sounds and her lips turned bright blue. We set a timer - 5 minutes later she was still seizing and we administered her rescue med. Within moments she was in recovery, starting to relax in my arms as the paramedics arrived and off we went for our second ER visit. This one turned into a two night stay as keppra was started and the doctors observed Jane to see how she would respond.

From that time forward our life has been a constant juggle between wanting to allow our daughter to feel normal and unrestricted by her epilepsy, and the reality that Jane doesn’t have any known triggers and her seizures happen without warning at any time. 

After Jane’s initial diagnosis we went three years seizure-free with medication. While she was seizure-free we still worried every single day that she would have a breakthrough seizure. We never left her alone, and we always trained neighbors, family members and caregivers on proper administration of her rescue medication. It always boggled my mind that the only person in her public school who would be allowed to administer her medication was the school nurse. This is a medication that means the difference between recovery and brain damage, and potentially, though very hard to admit, life and death for my daughter. I could train 16 year-old babysitters, her 3-year older sister, my 70-year old mother and everyone in between on how to save my daughter but while at school, the only person the state of Massachusetts will allow to save my daughter is the school nurse. During those three years I was always bothered by this, but I also felt lucky that she was doing so well and it probably wouldn’t matter for us. We are also fortunate that we live in a small town where the nurse is full time and the school isn’t huge - that matters when time also matters.

Everything changed in April of 2020. Just after the pandemic shut the world down Jane started to have weekly tonic-clonic seizures. Sometimes more than once and twice a week. Every once in a while we would get to 10-days seizure free and it would be worth a celebration. 

At least I knew that I could keep my daughter safe. School was closed and she was home under the watchful eyes of me, her dad and her sister. When fall came, and it was time to send her back to school I was nervous. What if she had a seizure and the nurse couldn’t get to her fast enough? What if she had a seizure while riding the school bus? What if she has a seizure during the after-school program after the school nurse is gone for the day? My husband and I are both teachers - Jane has to ride the bus in the morning because dropping her off at school means that we can’t be to work on time and she has to go to the after school program for an hour every day because that is when we can pick her up. Financially, in order to take care of our children, we both need to work. One of us leaving our job to bring Jane to and from school every day is not an option for us. And so, we enter into a game of chance every day. Hoping and praying a seizure won’t come when she isn’t in the building. Fortunately the school provides a bus monitor who rides with Jane every day and keeps an eye out for seizures, but if she has one all he can do is alert the driver and call for an ambulance. Even when the ambulance arrives there won’t be a rescue med to give to her because nobody - not the monitor, the bus driver, nor Jane is allowed to carry her Valtoco. Only the school nurse. 

For a time we put a Valtoco in her backpack. This way, if something happened we could tell the person calling us that they could find a rescue med in her backpack and then they could save her. They would be able to hand it off to a paramedic, or use it themself. It is so easy to administer. It is administered nasally. If you’ve ever put a squirt of Flonase or Afrin in your nose you know how to do it. 

The school soon told us we were not allowed to have it in her backpack. We didn’t know that. We are still shocked that she can’t carry it in her backpack. I can’t believe we live in a world where children are not allowed to carry a medication that can save their life.

There are other challenges. For example, Jane was excluded from a field trip with her afterschool program. During professional day half-days Jane goes to the after school program. The program walked 10 minutes from the school to town, in the direction of the fire department and paramedics, to get ice cream. Since a school nurse was not available to accompany the students on the walk Jane was not allowed to go. This means that this law is also preventing Jane from having access to normal things with normal kids. If anything, by going on the walk she would be safer since if anything would have happened she would have been closer to the EMTs. 

Despite all of the challenges Jane has faced in her life she is a radiant, energetic, loving and lovable firecracker. She loves her stuffed animals and playing on playgrounds. She loves riding her bike and she even skis. She enjoys fishing, playing on her iPad and being with her family. 

We wish for Jane that none of us would ever have to spend another minute worried about whether or not her rescue med was within 5 minutes of her and whether or not a person authorized to administer her medication was also within 5 minutes of her. I wish for all families who live this daily roulette, that they would also have the same peace of mind that they and their children would not have to worry about the proximity of a rescue medication and the availability of an authorized user.  

I mentioned that my husband and I are both school teachers. In my work I am trained every year on basic first-aid, how to use an epi-pen, how to notice if diabetic students need help and how to help, and what to do if my student is recovering from a concussion. When I go on field trips I am allowed to carry epi-pens, glucose tablets and inhalers and once the kids are old enough they are allowed to carry these things for themselves. Neither my husband nor I have ever been trained on seizure first aid in our work-places, yet seizure disorders are increasingly common. Passing this bill means that we are holding our kids with seizure disorders with the same love and care that we are holding our kids with asthma, allergies, diabetes, and other life-threatening medical conditions.

Passing House Bill 533 is important to me because all people deserve access to life saving rescue medications. Public school employees are CORI-checked professionals who should be trusted to carry and administer seizure rescue medications that are FDA appoved.

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

Kate Morton