In September, 1980 our son, Teddy, was born.  In May, 1981 he was diagnosed with Sandhoff's disease, an inevitably fatal, hereditary deterioration of the central nervous system.  In spite of being advised that caring for him ourselves would become too difficult, we decided to care for him at home until he convinced us he had lost all awareness.  But he never did.  He remained at home with us until he died in August, 1987.  Our goal for our book is to tell our own story of caring for Teddy, and of our grieving and learning.  Our book contains 45 pages and photos of fifteen paintings by Peter about our experience, along with writings and photos by both of us.  We hope it may help all of you to better receive the value hiding in the pain of your own stories.  We must learn to live valuing the fact that we are all dying.

Below are a few pages...

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For more information on Sandhoff's Disease, see www.sandhoff.org