Hello I'm Sean

Hi, I’m Sean.

 

I’m a kid who loves LEGO. I like building things, figuring out how pieces fit together, and imagining worlds where everything makes sense.

 

But my body doesn’t always cooperate.

 

I live with a rare and severe form of epilepsy. Fewer than one percent of people with seizures have what I have. The medicine doesn’t work for me. The doctors in St. Louis tried everything they could, and eventually they had to tell my family there was nothing more they could do here. Hearing that was scary. It still is.

 

To keep fighting, I have to go to a specialized hospital in Chicago. It’s the only place with doctors who understand seizures like mine. Getting there, staying there, and continuing care is hard — not just on my body, but on my family.

 

I’m also autistic. My mom is my safe place. She’s my rock. She had to stop working so she could homeschool me, take care of me, and be there when I need her — which is a lot. Because of that, my family has very little income now.

 

Some of my medical bills are covered, but living doesn’t stop when the hospital visit ends. I will need help for the rest of my life. I need support for learning, therapy, nutrition, physical therapy, and the everyday care that helps me feel like a kid and not just a patient.

 

There isn’t much research for what I have. Sometimes it feels like we’re fighting something the world hasn’t figured out yet. But my mom never gives up on me. And I’m trying really hard not to give up either.

 

When you donate, you’re helping me keep learning. You’re helping me keep building. You’re helping my family stay together while we do everything we can to give me a full life.

 

Thank you for seeing me.

Thank you for helping me keep going.

 

Love,

Sean