1.
Sofie’s
Journey
2016
update
Brad
&
Candy
Levy
This
is
a
follow
up
to
our
original
story
from
April
2014.
We
want
to
update
families,
so
that
people
can
see
that
continued
progress
and
success
is
possible.
We
also
want
to
update
everyone
on
the
growth
of
Epilepsy
Awareness
Day
at
Disneyland
and
the
upcoming
event
this
Nov.
2&3,
2016.
Until
our
only
child,
Sofie,
developed
epilepsy,
Brad
focused
on
the
family’s’
retail
store
and
consulting
business
and
Candy
worked
representing
composers,
volunteering
at
Sofie’s
school
and
with
their
local
special
needs
group.
Sofie
was
5
and
a
half
years
old
when
we
noticed
her
first
seizure.
We
are
not
sure
how
many
went
undetected,
as
they
were
pretty
mild
in
the
beginning.
Sofie’s
first
identified
seizure
was
on
Friday,
May
20,
2005
just
before
6
a.m.,
a
day
we
will
never
forget.
Sofie
woke
up,
tried
to
talk,
but
her
speech
was
“stuck”
(for
lack
of
a
better
word)
at
first
we
thought
she
was
playing
around,
but
then
we
panicked.
Like
any
scared
parent,
we
called
9-‐1-‐1.
By
the
time
the
paramedics
arrived,
3
of
the
longest
minutes
later,
she
was
yapping
up
a
storm
and
questioning
why
there
were
paramedics
in
the
house!
Sofie
continued
to
have
seizures
despite
many
medications
and
many
(mis)diagnoses.
We
sought
several
opinions
and
consulted
many
neurologists,
epileptologists
and
neurosurgeons
nationwide.
2.
Sofie’s
Journey
2016
update
Brad
&
Candy
Levy
When
Sofie
continued
to
have
seizures,
3
and
a
half
years
later,
the
opportunity
was
presented
for
Sofie
to
have
a
neurosurgical
evaluation
to
see
if
she
was
truly
a
surgical
candidate.
The
evaluation
included
neuropsychological
testing,
as
well
as
the
Wada
Test.
We
were
fortunate
enough
to
be
lead
to
Sofie’s
cure:
at
the
pediatric
epilepsy
surgery
program
at
UCLA
Mattel
Children’s
Hospital
with
our
hero,
Dr.
Gary
Mathern
and
Dr.
Raman
Sankar
&
their
team.
We
always
thought
brain
surgery
was
a
last
option,
not
understanding
that
sometimes
it’s
the
best
option.
Great
news,
Sofie
was
a
candidate!
It
was
time
to
explain
how
fortunate
she
was
to
be
a
surgical
candidate,
that
she
wound
up
a
lucky
one
to
have
a
surgically
treatable
disorder!
Once
we
understood,
our
focus
changed
to
helping
our
child,
and
now,
others
like
her,
with
epilepsy.
We
didn’t
realize
what
a
stigma
epilepsy
carries.
Looking
back,
we
were
guilty
of
it
too
by
telling
people
she
had
a
“seizure
disorder.”
What
is
often
called
seizure
disorder
is
really
EPILEPSY,
but
it
doesn’t
sound
as
bad!
Friday,
February
27,
2009
became
the
scariest
and
at
the
same
time,
the
best
day
of
our
lives.
Sofie
had
a
left
temporal
medial
lobectomy;
her
“troublemaker”
was
removed.
It
was
the
lesion
that
was
the
cause
of
her
focal
dyscognitive
seizures
that
she
used
to
call
her
“crookies.”
We
had
agreed
that
surgery
was
the
best
chance
for
Sofie
to
be
a
“regular”
kid,
but
it
was
still
hard
to
grasp
that
she
was
having
brain
surgery.
We
had
plenty
of
friends
and
family
question
our
decision.
Some
thought
we
weren’t
making
the
right
choice,
and
to
them
we
can
only
say
we
followed
our
heart,
we
trusted
the
tests
and
the
doctors
and
they
didn’t
let
us
down.
When
the
surgery
was
described
as
“just
another
day
at
the
office”
we
were
in
awe.
We
brought
our
Rabbi,
family
and
close
friends
to
UCLA
on
the
big
day
and
prayed
for
this
surgery
to
be
Sofie’s
cure.
Brad
added
the
promise
to
ensure
others
would
have
opportunities
like
his
daughter,
and
this
has
happened.
Now,
nearly
7
years
later,
Brad
Levy
&
family
is
EEG
to
Go,
a
full
service
EEG
monitoring
service
catering
to
kids
(&
adults)
mainly,
but
not
only
with
special
needs.
3.
Sofie’s
Journey
2016
update
Brad
&
Candy
Levy
As
her
parents,
we
are
ecstatic
that
Sofie
is
coming
up
on
7
years
seizure
free
this
February
27th!!
Sofie
is
currently
in
10th
grade,
mastering
American
Sign
language,
aerial
acrobatics
and
doing
alot
of
writing.
Sofie
has
a
unique
connection
with
younger
kids
(&
older
adults)
and
is
currently
working
on
becoming
a
Neurodiognostic
technician
and
performing
EEGs
on
kids
very
soon!
As
a
family,
we
have
further
focused
our
passion
for
epilepsy
awareness,
ensuring
others
are
afforded
opportunities
to
receive
great
epilepsy
care
by
creating
EPILEPSY
AWARENESS
DAY
AT
DISNEYLAND
RESORT,
which
debuted
11/7/2013.
The
following
day,
Candy
volunteered
to
continue
as
the
coordinator
for
EADDL
2014
and
beyond.
2015
was
an
awesome
gathering.
Over
1700
people
came
from
Europe,
Australia,
all
across
the
USA
and
Canada.
We
are
determined
to
make
the
2016
event
the
biggest
&
most
educational
gathering
of
Epilepsy
support
ever!
Please
visit
the
website
and
Facebook
page
for
current
information.
We
will
be
updating
it
often
so
check
back
for
new
info!
We
did
it;
a
lot
of
people
do
it.
We
are
just
trying
to
give
back
to
those
who
need
a
bit
of
guidance.
When
we
began
on
Sofie’s
Journey,
we
didn’t
know
about
support
groups,
I
don’t
know
if
there
were
any
Facebook
pages
for
epilepsy
or
brain
surgery,
but
those
times
have
changed
and
we
are
making
sure
of
it.
PLEASE
look
us
up,
pass
the
information
on
to
someone
you
know,
whether
they
are
affected
(or
not),
by
epilepsy
or
know
someone
who
is.
It
can
be
the
best
thing
you
do
for
them.
Please
come
and
support
someone
you
love!
