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From YouTube: JULY 21 2020 Statements Stephanie Cadieux
Description
The Legislative Assembly of British Columbia
5th Session
41st Parliament
A
A
Even
though
researchers
have
made
exceptional
progress
in
learning
how
to
diagnose,
treat
and
prevent
several
of
these
rare
diseases,
many
still
have
no
treatment.
Dravet
syndrome
is
a
rare
genetic
form
of
epilepsy
that
affects
one
in
about
15,
000
individuals,
individuals
with
your
vet
syndrome,
experience
frequent
and
prolonged
seizures
that
start
during
infancy,
delayed
speech
and
language
issues,
sleeping
difficulties,
chronic
infections
and
more
milo,
duke,
a
very,
very
young
constituent
of
mine,
is
one
of
the
few
cons.
Canadians
who's
been
diagnosed
with
trivet
syndrome.
A
This
beautiful
little
toddler
frequently
has
seizures,
which
can
last
up
to
two
hours
and
are
life-threatening
ventepla
fda
approved,
anti-seizure,
sheath,
anti-seizure
therapy
for
patients
two
years
and
older
has
been
approved.
Mila's
parents,
john
and
christina
duke
hope,
are
hopeful
that
fintapla
might
help
improve
miele's
quality
of
life.
However,
right
now
we
don't
know
if
pinteplo
will
be
approved
in
canada,
and
even
if
it
is,
the
affordability
of
the
anti-seizure
therapy
will
likely
be
another
hurdle,
as
it's
projected
the
average
cost
could
be
96
000
a
year.
A
A
service
dog
trained
to
predict
and
help
manage
seizures
might
be
helpful.
So
john
and
christina
are
working
towards
this.
However,
mila's
young
age
makes
her
ineligible
to
get
a
dog
from
the
only
canadian
agency
that
trains
dogs
to
handle
seizures.
Purchasing
a
dog
from
four
paws
for
abilitability
in
ohio
will
cost
seventeen
thousand
dollars
u.s.