Jordyn was diagnosed with Alexander disease on October 2, 2015. She began having tremors and losing skills in the spring of that year which prompted a visit to a neurologist. Jordyn maintained skills through extensive therapies including occupational, speech, and physical. She has since lost the ability to walk and has had a g-tube placed for 100% nutrition. She is in a natural history research study at Children’s Hospital of Philadelphia. Jordyn loves school and meeting new people. She is a social butterfly and is a very happy kid who loves life.