This chronicles my son Sean's journey with an extremely rare disease, Proteus Syndrome. Diagnosed at age 8, he was treated at the National Institutes of Health in Bethesda, Maryland for 9 years until his death at age 16 in 2002. The book was written from 9 years of journal writing. Sean's personality eclipsed his illness with such unwavering faith, a wicked sense of humor, his love of animals, and his intellect. Sean led a very big life and had great adventures. From driving a race car to meeting the Grateful Deadand going to Lourdes he was an inspiration to those who knew him.