"Out of Breath" A Memoir

Sean Henderson and His True Adventures With Proteus Syndrome

by Lindsey Henderson Preece

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Overview

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.

Description

"Out Of Breath" is the story of Sean Henderson and his diagnosis at age 8 with Proteus Syndrome. Sean treated his illness as a separate thing and continued to live his life fully and with purpose, guided by his beautiful faith. He lived a charmed life in spite of his disease. His love of animals and his sense of humor was legendary, in spite of having spent most of his life in hospitals. He encouraged so many people with his gentle spirit, kindness, and courage.

About the author

I was an Executive Chef for 32 years. Retired now, I'm a mosaic artist and I'm writing my first book of fiction.

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