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AUCKLAND CITY HARBOUR NEWS, FEBRUARY 27, 2013
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Katie's brave battle goes on
Rare gem: Four-year-old Katie Archer is
living life to the fullest despite having a
rare degenerative condition that will
slowly claim her life over the next four to
Photo: JASON OXENHAM
By DANIELLE STREET
LISA Archer knows first-hand how
isolating it can be to have a child
with a rare and fatal disease.
Late last year Mrs Archer and
husband Brett were told their youn-
gest daughter Katie had late infan-
tile Batten's disease, an extremely
rare genetic disorder shared by only
one other person in the country.
Batten's is a degenerative neuro-
logical condition where an accumu-
lation of lipids in the brain lead to
The disease will slowly rob the
4-year-old of her sight, take control
of her body and mind, and by the
age of 10 it will likely have taken
her life. There is no treatment for
When the Auckland City Harbour
News spoke to Mrs Archer in Octo-
ber, she said they had spent a lot of
time crying'' about their daughter's
rapidly deteriorating health.
Four months on and the mother-
of-three says life is less hectic now''
that they have come to terms with
This would never happen to us'
has gone out the window, we are in
a whole new world dealing with a
child whose death is unavoidable,''
They have watched their daugh-
ter go from running in the play-
ground to barely being able to walk
unaided. She cannot speak and she
wears a safety helmet to protect her
from constant stumbles.
While it is uncertain whether
Katie will be able to attend school
when she turns five, the family have
made plans for her to attend a
specialist school equipped for
She is not in a wheelchair yet,
she can stand and hold my hand
and walk along, but I imagine by
the time her birthday comes in June
she will be,'' Mrs Archer says.
The specialist schools are geared
up for that.''
Katie spends her mornings at
daycare, getting in some good play-
time and giving her parents a well-
The Grey Lynn couple also found
much-needed support from chari-
table trust Lysomal Diseases New
The trust assisted the Archers to
travel to Australia to attend a Bat-
ten's meeting where they could
meet other people affected by the
When kids have a condition
where they might be the only one in
Auckland or even New Zealand with
it, it can be really isolating,'' she
People don't really know or
understand. I mean I hadn't heard
about Batten's until Katie was diag-
nosed with it.''
Mrs Archer is appealing to people
to show their support for causes like
Lysomal Disease New Zealand for
Rare Diseases Day tomorrow.
There are more than 7000 rare
diseases that affect 8 per cent of the
The annual campaign is held
around the globe to recognise
patients that are often orphans of
the health system''.
According to the New Zealand
Organisation for Rare Diseases
around 50 per cent of rare diseases
have no specific foundation to sup-
port or research the condition.
So this year the organisation
decided to go to bat for small groups
supporting those with very rare con-
ditions, rather than focus on its own
Executive director John Forman
says part of its mission is to help
support groups operate effectively.
Rare Disease Day is the perfect
opportunity for us to give a leg-up to
groups who often struggle for atten-
tion to their disorder in the health
system,'' he says.
Visit ldnz.org.nz to find out how to
donate to Lysomal Disease New
Zealand or visit rarediseaseday.
org.nz for a support group directory.
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