Prove Them Wrong: A Legacy of Kindness

My name is Erin Schweitzer, and I would like to share a devastating yet inspirational story about my oldest son, Isaac. On May 22, 2020 I found Isaac dead in his bed, he was 15 years old. Up until 8 weeks prior, Isaac was a healthy teenager, and had never had a seizure in his life. Isaac had his first tonic clonic (grand mal) seizure on March 27, 2020. Over the next 7 weeks he had 3 more nocturnal tonic clonic seizures. When Isaac had his 4th nocturnal tonic clonic seizure, he passed away. Isaac died of SUDEP, sudden unexpected death in epilepsy. SUDEP is the number one cause of death for people with epilepsy, however doctors do not inform patients about it. Not only were we not told about SUDEP, we were never told Isaac had epilepsy. 95% of people who loose loved ones to SUDEP find out about it after their loved one has died.

After Isaac's death, I knew instantly that could not go back to work. Up until his death, I had been a police officer for 25 years. I spent 22 of my 25 years as a detective investigating child abuse and internet crimes against children. I think had I been able to continue as a detective, I would have seen the child and their family and think “I know your child was abused in the worst way, but my child is dead”. Survivors of child abuse and their families deserve the absolute best investigator in their corner. I was no longer that person. Prior to Isaac's death I had the best job in the world, I got to rescue kids for a living. After several months of grieving, I made Isaac and myself a promise that in his honor, I would educate as many people as possible about this deadly phenomenon. I hope with this effort, I am still helping families, just in a different way now.

Now, my goal is to inform others about SUDEP by telling Isaac's story, one person at a time if I have to. I also promised Isaac that I would spread his mantra of "Prove Them Wrong" and carry on his legacy by validating those who feel unseen and are sometimes left out. By sharing Isaac's struggle with social anxiety and how he took it upon himself at such a young age to stop listening to outside "noise and influences" that don't matter. Isaac began to believe in himself and he changed his stars on his own.

Isaac was a very introverted person. He loved to read and create things both with his hands and on his computer. Like many kids, he struggled with social anxiety. At times throughout his short life, he missed out on play dates and birthday parties, and he didn’t always fit in. Isaac was underestimated by many, and I could tell it bothered him when he was not included. I used to tell him if he ever saw another kid being left out or picked on, he should talk to that kid and help them feel included, as he knew what it felt like to be left out at times. Isaac was wise beyond his years, an old soul perhaps. Isaac was the type of child that if something was bothering him, instead of complaining about it, he would work hard to change his situation. In the 4th grade, Isaac started playing lacrosse and continued to play until he died. He enjoyed being part of a team and was a great example of what a “teammate” should look like.

Isaac also went out for freshman football, a sport that he never played. Once again, I saw him work hard and learn the game of football as well as how to play. Isaac was not the best player or the fastest on the field, but every one of his coaches told us at the end of each season, Isaac was one of their favorite players to coach. They would say he worked harder than anyone else on and off the field, which they appreciated. More importantly, Isaac was a great teammate, often leading by example. As he got older, he would show by his actions that a player does not have to be the most talented on the field, and should be dedicated to his team by always showing up, working hard, doing what was asked of him, and have a great attitude on and off the field.

The summer before his freshman year, Isaac made the SHS freshman football team. At that time, he began to lift weights as part of his conditioning. It was during this time that we really saw him gain some confidence and started believing in himself. It was great to see him so happy. Around that time, Isaac bought a dog tag necklace and never took it off. After he died, we wanted him to wear it at his funeral. As I handed the necklace to the funeral director, I noticed he had something engraved on it. His father and I had no idea that he engraved the words “Prove Them Wrong” on the dog tag. I believe he started to gain confidence through lifting weights. He started to believe in himself and stopped listening to all the negative noise that surrounded him. Isaac knew only he could change his stars, and he did it for himself, quietly and with hard work and dedication. He led by example and didn’t need to tell people that he would "Prove Them Wrong". He did it on his own, and only for himself. Those words were just for him. To empower himself and to be a confident and genuine human.

I am so proud of the young man he was becoming. I feel blessed that I was able to see a glimpse of who he would have been. Since his passing, I have had countless people parents and kids alike who tell me story after story about how kind Isaac was to everyone. I was told he was always the first one to introduce himself to the new kids so they didn’t feel alone and left out. He knew how that makes you feel, and he didn’t want that for other kids.

For the last 3 years I have been sharing Isaac's story, handing out Prove Them Wrong wristbands, t-shirts, key chains and bumper stickers at local events, or anyone who asks me about Prove Them Wrong. Each July there is a large lacrosse tournament held in Sherwood called NW Robin hood Skirmish that a local family founded. They started it in July 2021 to raise money for youth lacrosse. They asked if they could honor Isaac during that annual tournament and have “Prove Them Wrong” on the lower back seem of every jersey. They also allow me to have a table right next to registration so everyone can see the wristbands and read Isaac’s story. Over the past three summers, I have talked to hundreds of people. When talking about Isaac, depending on the audience, I talk about how he died and the dangers of SUDEP. I have realized that almost everyone I spoke with has someone in their life effected by seizures/epilepsy, yet not one person has heard of SUDEP.

Eight months after Isaac died, I met with his pediatric neurologist, who works at an epilepsy center. I needed to get some clarity regarding Isaac’s death. During that visit, she stood by her treatment of Isaac, and told me once again that seizures are not dangerous. She said they become dangerous after the patient has had a tonic clonic seizure for 60 minutes or more, and as long as he doesn’t drive or swim alone, he would be fine. It takes less than 10 seconds to hand a parent of a child with epilepsy a flyer about SUDEP. At the end of our meeting, I begged in Isaac’s honor, if could she start telling all her patients about SUDEP. She promised me that mother to mother.

During the last two LAX tournaments, I have met two separate families, both with a young teen with epilepsy. Neither one of them had ever heard of SUDEP. Both of these families have Isaac’s doctor treating them and had no idea about SUDEP. I was crushed to hear that Isaac’s death meant so little to his doctor that she could not even honor the promise she made to a grieving mother. This is why I continue to talk about SUDEP everywhere I go, as well as Prove Them Wrong. The two stories separately are devastating and heartening. When I tell them together, as Isaac lived it, it is such a strong message which has become its own entity. I am just the messenger in all of this. Isaac was and still is the driving force behind Prove Them Wrong

This past February, they hosted a SW Robin hood skirmish in Mesa AZ. There were over 110 teams from around North America in attendance. I handed out over 1,000 wristbands and 50 shirts (I ran out of shirts) over 2 days. By the end of the tournament everyone was talking about “Prove Them Wrong”, and some hopefully planning on having a brief conversation with loved ones regarding SUDEP. When I am at these events and there are kids everywhere looking for free stuff, they always end up at my table. They all take a couple wristbands, “for their siblings”. If they are old enough to comprehend Isaac’s story, I let them read it. It they are too young to grasp the message, I tell them they can only have a wristband if they promise to always believe in themselves. So many people I have met while doing this can relate to Isaac’s story. In a world where everything and everyone is compared to something that just isn’t real, Prove Them Wrong empowers these young minds to quiet the noise and listen to themselves. If they listen carefully, they may just hear Isaac cheering them on from above.

Any funds raised will go to buying wristbands, bumper stickers, t-shirts and new signage with Isaac’s story. I have been paying for all of the product myself over the last three years, and I just can’t afford to keep up with the demand. I don’t want to charge people at my table as a lot of the time kids are with their friends and not their parents. To me, it is worth giving them out to people as it will spread the message. A close friend of ours saw a Prove Them Wrong wristband while on a Mexican cruise last New Year’s eve. Prove Them Wrong has become much bigger than anticipated. I will continue to spread Isaac's story, both SUDEP and Prove Them Wrong, in hopes that it may save a family from going through what we have been facing.