A’ S L I F E
DS ON IT
he rules!
Fromleft:Hanna,sevenmonths;with
youngersiblingsEmaleeandFelix;Mum
andDadsupportingtheirbeautyqueen.Maree can’t sit by and
watch her girl succumb
to CF. “How can you turn
to someone and say they’re
not worthy of the money
it takes to live?” she asks.seen it accepted in every first
world country, except New
Zealand.”
At the moment, it would
cost Hanna about $300,000
a year for Kalydeco, which
Pharmac passed for
consideration recently but
labelled as a low priority.
“This means it could take
10 years before the drug is
available here and that’s just
too late,” explains the travel
consultant, also mum to
Emalee, 25, and Felix, 17,
with husband Matthew, 53.
For Hanna – whose biggest
dream is to become a mother- having Kalydeco would spell
less treatments and knowing
that if she does have a family,
she won’t be leaving children
behind. “While everyone else
just goes through life, I have
to keep myself alive and it’s a
weird thing,” tells Hanna, who
uses nebulisers twice a day to
help her breathe and ingests
15 tablets. She’s also had
various surgeries, including
the removal of her gallbladder.
“It can be pretty depressing
sometimes, but my family’s
really supportive,” says Hanna.
“I know it’s hard for them to
have to watch too.”
Maree recalls cradling
her eight-week-old baby and
being asked if there was CF
in her family, after Hanna’s
newborn heel prick test.
“I remembered my cousin
died at four, but not the name
of the condition,” tells Maree.
“I rang my mother and she
told me it was CF. I couldn’t
talk at that point because in
my mind that was exactly
what was going to happen
to this beautiful baby.”
Hanna knew she was sick
as a girl and Maree recalls, “One
of the hardest things I ever
heard my child say was the
song she wanted played at her
funeral. It was Celine Dion’s
‘Fly’. As a mother, your heart
is bleeding from your chest.”
But Hanna grew into an
adventurous young woman,
even bungee jumping with
her doting mum recently.“You see these
staunch guys get to
the edge and walk
away because they can’t
do it, and it took me a few
minutes to find the courage
to jump,” Maree laughs. “But
Hanna went straight up to the
edge and over, with no
hesitation! She’s always done
everything really fast.”
As well as praising her
eldest child for being sweet
and empathetic, the proud
mum says Hanna will make
an incredible teacher – if she
gets the opportunity.
“She’s wonderful with
kids and wants to incorporate
photography into primary
teaching,” says Maree. “She’s
won awards for photography.”
Currently, Hanna tries to
coordinate hospital visits with
her university holidays so she
doesn’t miss her studies.
“The problem with CF is
once they get a chest infection,
the mucus doesn’t disperse
and it causes infection and
lung damage,” says Maree.
“She’s not long out of hospital
and I’m already starting to
notice she’s not recovering
as well, so we feel like we’re
in this last-ditch stage now.”
Now, the desperate family
is pushing for Kalydeco to be
made available for Kiwis sooner.
“How do you watch one
of your children deteriorate in
health, knowing that within
this beautiful country I can’t
make anybody listen to me?”asks Maree, who has sent
multiple letters to Parliament.
“How can you turn to
someone and say they’re not
worthy of the money it takes
to live, when there’s a drug
that would do that for her?
It’s painfully frustrating.”
Pharmac chief executive
Sarah Fitt says the low priority
recommendation for funding
of Kalydeco (Ivacaftor) is due
to the “moderate quality
evidence of health benefits,
the limited availability of long-
term data and the high cost.
“Ivacaftor remains on our
options for investment list,
however, we cannot give a
timeframe for when it will
be funded.”
Ten years ago, Maree sat
in a church at the funeral of
a 15-year-old local girl who
had died from CF, with Hanna
next to her, coughing away.
Maree concludes, “Parents
of children with conditions
like CF suffer every day with
the pain of imagining what’s
coming and there’s nothing
you can do. I can’t imagine
not having that fear and
waking up one day without
this weightonmyheart.”#Woman’s Day 35