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A Community of Compassion

On March 15, 2002, Richard Sachs and Karen Herzog were told that their soulful, browned-eyed daughter, Sophia, would most likely not survive past the age of three. At the age of ten months, she was diagnosed with Niemann-Pick Disease, Type A, a rare and incurable genetic disorder.

As they began their journey of coping with Sophia and their family’s needs, they discovered that our present healthcare system did not meet many of the physical, emotional, spiritual and financial needs that arose. What was missing? How would they care for Sophia? How would their family heal? How would they survive?

What happened over the next four years was nothing short of extraordinary. Drawing upon their backgrounds in sales and high-tech marketing, they began to reach out for help. The response amazed them. Individuals and groups from all walks of life and fields of endeavor were drawn into what became a palpable circle of healing. Moved by Sophia’s radiant presence and the family’s optimism and openness, as well as inspired by the experience of community, people began to respond in unprecedented ways. The walls between people, disciplines, and geographic boundaries dissolved—fostering collaboration, compassion and creativity. The level of integrated care that Sophia received rose exponentially. In this supportive, family-centered environment, people’s hearts were free to break open, and a healing community was born.

Karen and Richard believe that those who participated in this community over the four years of Sophia’s life did, indeed, experience their time with her as an opportunity for growth and healing. They wish to offer the openness and collective wisdom of Sophia’s healing community to others so that we all might learn how to better care for children with life-threatening conditions. They see this as Sophia’s legacy to the world.