Avery Brizzee is the namesake for the Bravery for Avery event, a race that’s in its second year. At the age of six, Avery was diagnosed with a rare form of childhood dementia called Sanfilippo Syndrome.

“At 5-years-old she wasn’t where she needed to be as far as motor skills,” Jessika Torrans, Avery’s mother says.

Originally Avery’s parents thought that she had a behavioral disorder and they also had Avery perform an IQ test in an attempt to identify her condition.