Meet Emory

Emory was diagnosed with Alexander’s disease in April 2025. It took us a very long time to get answers. For years, she suffered from ongoing nausea, vomiting, and failure to thrive. We saw countless doctors, completed extensive testing, and still had no explanation or meaningful way to help her.

Eventually, Emory became so sick and underweight that she had to be hospitalized. It was then that a provider recommended a brain MRI. We finally discovered the source of the problem. It was not in her GI tract. It was in her brain.

That MRI led us to her diagnosis of Alexander’s disease. It also led us to the End AxD community and eventually to Dr. Waldman.

Since starting medication to help alleviate the nausea and vomiting, Emory has been more stable. However, there is no guarantee this treatment will continue to work. There are no additional options available to us if it stops being effective.

We are so hopeful for new therapies and ultimately a cure. It is devastating to think about where this disease could lead. It is heartbreaking to imagine her continuing to struggle as new symptoms develop.

Emory is an incredible person. She is bright and vibrant, just like so many others living with this disease. She loves her friends. She loves her family. She loves to play hockey. She loves animals. She loves being at school and participating in whatever comes next. She is a valued member of her community, and anyone who meets her falls in love with her.