“My kids know I have a disease, and we talk about it at an age-appropriate level. Some children’s books lend themselves to flawed/different characters and help my children better understand my experience living with a rare disease. One book describes [a] rare disease as a zebra with ‘incorrect’ stripes. My kids know I am well and know that there are people who take care of me.”
CRAIG KLEIN is a father of three active, healthy, and worry-free kids. In 2015, Craig was diagnosed with Neuromyelitis Optica Spectrum Disorder (NMOSD), which is a rare autoimmune disease that affects the central nervous system. He describes his journey as, “a series of fortunate outcomes in an unfortunate environment.” Since his diagnosis, Craig is dedicated to spreading awareness about NMOSD. Recently, he shared his story in the short film created by Alexion called Rare Connections in NMOSD.
