Aicardi syndrome is a rare genetic condition that mostly affects girls and happens when a part of the brain called the corpus callosum, which connects the two halves of the brain, doesn’t form as it should. It can cause seizures, developmental delays, and vision problems, and each person’s symptoms can be different. Since it’s very rare, doctors and researchers are still learning more about it, but families and support groups work together to raise awareness and help those affected live the best life possible.

In honor of Sarah Mae, her family is hosting a walk for awareness of Aicardi syndrome, a rare epilepsy disorder.

Sarah Mae was non-verbal and wheelchair-bound, but it didn’t stop her from smiling and shining bright. She passed away on October 9th, 2024, due to complications while recovering from pneumonia.

Half of the donations will go to the charity Aicardi Syndrome Foundation and the other half will go to a student at Hungerford School as a scholarship in Sarah Mae's name.