'Out of Breath' A Memoir by Lindsey Henderson Preece

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 Dead and going to Lourdes he was an inspiration to those who knew him.