photograph of young man, wearing a yellow t-shirt against a yellow background, looking straight at camera determinedly

I am Ruben

I am Ruben. I’m 11 years old. 

My epilepsy means I have absence seizures.  

I’ll be doing something and when I have a seizure, I stop whatever I’m doing. I will lose my train of thought and stare blankly for about 10 seconds, maybe five, depends.  

Ruben in a yellow t-shirt

I take medication for my epilepsy, which has helped me a lot. My absence seizures have dropped from, like, 10 a day to, like, three.  

When I grow up, I want to be a music producer. I produce music already, chill hop type music.  

My friends are quite supportive of my epilepsy. They don't change how they act. They just see me as me, which I like about them. That's why they're my friends.  

My teachers, they just didn't get it. And I got punished because they didn't understand, which was hurtful. And I felt singled out.  

Some of my teachers would think that I was just daydreaming. I would get detentions and sanctions and stuff, and I'd miss out on play time. I just wasn't treated as fairly as the other students.  

I had to leave my school because they didn't understand my epilepsy. I was disappointed because I had to leave all my friends behind, had to leave the whole school, which I loved, and it hurt me. I miss my friends. Because my friends see me. 

I am home schooled now, my mum gets that I'm different from other kids and that I need more support to do my schooling. I feel grateful for everything she does.  

Help teachers to see kids like me and understand they aren’t daydreaming. 

I am Ruben. Understand my epilepsy. 

Sign our petition today. 

Tell UK governments that they must ensure schools have an Individual Healthcare Plan (IHP) for every child with epilepsy. 

Ruben talking to film crew

Help children like Ruben and support #UnderstandMyEpilepsy

Help children like Ruben and support #UnderstandMyEpilepsy

Would you like to learn more about the campaign?

#UnderstandMyEpilepsy campaign is led by young people with epilepsy. We work with them; listen to them, and with them we will amplify their stories. Working together we will take their voices to the decision-makers and make them sit-up and listen. Click here to find out more.

Help children like Ruben and support #UnderstandMyEpilepsy

Do you know a young person with epilepsy?

If you know a young person who has epilepsy, you might be unsure of how to talk to them about it. Not all epilepsies are the same, so it can affect people differently. But don't worry, understanding their condition starts with a simple conversation. Click here to find out more.

Help children like Ruben and support #UnderstandMyEpilepsy

Do you teach a young person with epilepsy?

If you are an education professional or a provider of extracurricular activities for children and young people please visit our Guide for Schools which provides, information, tools and guidance and supporting young people in your care. Click here to find out more.