What began as a personal story of Sophia’s and our life evolved into a larger story of community and transformation. In retrospect, the “self” that evolved organically through observing, modeling, quantifying and creatively expressing—”lifelogging”—became a “collective” awareness and intention.

1. Looking for Meaning Beyond Work
I was in my late 30’s and had defined myself by my work
in architecture, design and Web technologies. As much
as I enjoyed the work, I found myself looking for deeper
meaning in my life.
New Definition through Sophia
Having
Sophia
was
a
way
to
define
myself
as
a
mother
and
a
teacher,
and
to
reconnect
with
my
crea9ve
self.
When
she
was
born,
as
parents
usually
do,
we
started
chronicling
her
life
in
all
the
normal
ways
such
as
photos,
videos,
cards,
emails
and
legal
and
medical
records.
As
it
turned
out,
this
process
of
lifelogging
became
a
way
to
define
Sophia,
our
family,
a
community
and
myself.
Diagnosis
NPA
Sophia wasn’t meeting her growth milestones and was
having repeated infections, in medical terms a “failure
to thrive.” After 3 months of painstaking tests, she was
diagnosed at 10 months with Niemann-Pick Disease,
Type A, a rare genetic, metabolic condition. She was
one of 8 to 10 children at any given time in the world
with this condition. Her life expectancy was 2 to 3 years.
Needless to say, my worldview was disrupted and
Sophia and our family started down an unexpected path.
Paths to Navigate & Call for Healing
The healthcare system didn’t have much to offer, except
physical and occupational therapy and grief counseling.
We wanted to maximize Sophia’s quality of life. The
mountain of work ahead of us was humbling. I intuitively
knew this was not about Sophia, not about our family,
but about all of us.
Emergence of Community Self
The larger group consciousness became apparent as we
developed a model of integrative care. The model helped
us recruit people as well as make strategic medical
decisions. Sophia’s Healing Circle helped the team make
sense of and bring order to the chaos and uncertainty.
Recordkeeping: The Icon of Empowerment
and Community
One of the main ways we took charge was to track
information—inputs, outputs, chemistry and care
activities—and it wasn’t that easy to get everyone
to do this.
Physical and Digital Records
After trying and failing to teach the nursing team how to
use Excel (no Health 2.0 tools at the time!), the team fell
in love with using physical sheets in a binder with a
photo of Sophia on the cover.
Community Review
The binder, open to all, became a symbol beyond what
was written in it. As the binder was passed from one
caregiver to the next, it became an icon of
empowerment, community and hope.
Home
Clinical
Trial
and
Case
Studies
Bring
Hope
and
Knowledge
Our
par9cipa9on
in
and
documenta9on
of
a
home-­‐based
clinical
trial
and
six
case
studies
on
Integra9ve
Medicine
&
Experimental
Pharmacogenomics
and
Tradi9onal
Chinese
Medicine.
Integrative Therapies at the End-of-Life
Gave our family a greater understanding of our
experience from a scientific, psycho-social and spiritual
perspective.
Collective Scientific Intelligence
The presentation and publication of the studies around
the world provided insight for our family and became part
of the collective intelligence.
Documentaries
Throughout
Sophia’s
life,
a
team
of
filmmakers
and
photographers
documented
the
ongoing
work
of
Sophia’s
Healing
Community.
The
1500
photographs
and
over
70
hours
of
footage
provided
a
record
for
us
to
explore
in
the
future.
Even
if
no
on
ever
saw
the
photos
or
film,
the
very
presence
of
these
ar9sts
in
our
home
gave
individuals
greater
self-­‐awareness
and
a
deeper
sense
of
purpose,
as
well
as
created
a
collec9ve
sense
of
history
and
legacy.
What began as a personal story of Sophia’s and our life evolved into a larger story of
community and transformation. In retrospect, the “self” that evolved organically through
observing, modeling, quantifying and creatively expressing—”lifelogging”—became a
“collective” awareness and intention.
Sophia’s World: lifelog a collective self
Karen Herzog and Richard Sachs • Valley Design Group and Sophia’s Garden Foundation