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
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
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.