About Addie

A little bit about me

A disease so rare that of the 7.8 billion people on that planet, I am one of 4,000 that have a condition known as Aicardi Syndrome. Aicardi Syndrome is a rare genetic disorder that interferes with the formation of the corpus callosum which is the structure that connects the two sides of the brain. Babies who are diagnosed with this disorder typically have intractable epilepsy (not controlled by treatment) which is what I struggle with every single day. On any given day I can have hundreds of cluster seizures. You can learn more about Aicardi Syndrome here. https://aicardisyndromefoundation.org/aicardi-syndrome/

Most people know me as Addie. I was born in 2012 and am 8 years old. I love life especially, when it comes to music as I love to sing and dance. I also like being the center of attention wherever I am. This website is about me, my condition, my struggles, my family, and my beautiful crazy life. Thanks for being a part of my journey and following along.

“Sometimes real superheroes live in the hearts of small children fighting big battles.”