Hi, my name is Levi.

I am almost five years old, and this is my story.

I was just 32 days old when my journey began. One day, while my mom was holding me, my arm and leg started twitching in a way that didn’t seem right. It stopped, then started again. My parents were scared. They rushed me to the emergency room, fearing I was having seizures.

From there, everything happened fast. I was given medication and transferred by ambulance to the hospital. My parents just wanted to be with me, but even getting into the ICU that night was a struggle. Eventually, they made it to me, and for days, they stayed by my side while doctors tried to figure out what was happening.

I went through MRIs, EEGs, CT scans, and more bloodwork than anyone could count. My parents waited, hoping for answers, but nothing could have prepared them for what came next.

I was diagnosed with Alexander Disease.

It’s an ultra-rare and devastating neurological condition. There are only around 100 known cases in the entire world. And one of them is me.

Alexander Disease affects how my brain works. It makes it harder for my body to do the things most people don’t even think about, like moving, talking, or keeping my balance. Every day can bring new challenges, and there is currently no cure.

But this is not just a story about a diagnosis.

This is a story about strength.

I work hard every single day. I go to school, I learn, and I try my best no matter what challenges I face. My teacher is incredible. She helps me, supports me, and makes sure I feel included. When I see her, I light up. My whole school is even coming together to wear shirts in support of me on Alexander Disease Day. That kind of love means everything.

My doctors and therapists are helping me grow stronger, step by step. And my family, they are my biggest supporters. They fight for me every day, raising awareness, sharing my story, and pushing for research that could one day change my future.

Because right now, there is no cure.

But there is hope.

Research is happening. Progress is being made. And with more awareness and support, we can help move that progress forward faster.

That’s why we are asking for your help.

Your donation will go toward funding research for Alexander Disease, supporting efforts to find treatments, and giving kids like me a chance at a better future.

Even if you can’t donate, sharing my story helps more than you know. The more people who learn about Alexander Disease, the closer we get to change.

I may be one of only a few in the world with this disease, but I am not alone.

I am Levi.

I am brave.

I am strong.

And with your help, my story can help change what comes next.

Thank you for being part of my fight.