Annual Report 2014/15

2016 will see the opening of the new Perth
Children’s Hospital (PCH). We are very fortunate
that the Department of Health recognises and
values the work of Kalparrin and has made
provision for Kalparrin’s Family Support program
to remain located in the new hospital. The new
hospital layout will require us to make some
adjustments, including shared office space with
other service providers, but we are committed to
maintaining our dedicated family support services
in the lounge.
We continue to explore opportunities for new
programs to support our families and to broaden
our range of services to meet our growing client
reach. We are excited by the feedback we are
getting from our siblings initiative program and will
look at ways we can develop our siblings support
program to meet contemporary approaches to
supporting siblings needs.
Anna’s story
My name is Anna Ulupova and I have been a
member of Kalparrin for the past five years. My
youngest son had a tumour in his abdomen. We did
not know about it until he had a stroke at 2 months
of age. There was a severe bleed on his brain which
required brain surgery and prolonged life support.
We are very lucky he has survived and the tumour
was successfully removed. He sustained significant
brain damage which caused cerebral palsy, cortical
blindness and severe seizures.
Three years ago he had another brain surgery -
hemispherectomy - where half of his brain was
removed to control seizures. For the past seven
years we have been in and out of the hospital
pretty much all the time - spending up to several
months as an inpatient. Our days are filled with
doctors’ appointments and different kinds of
therapy.
You never think that something like this can
happen to you. These sorts of stories you see on
the TV. We cannot undo what happened to our
son. His disability is permanent. We have to accept
it and learn to live with it. We have to help him to
achieve his full potential, advocate for him and
support him.
They say it takes a village to raise a child. It takes
much more to raise one with special needs. You
cannot underestimate the role of Kalparrin in the
lives of families like mine. When a tragic event
happens, the lives of the whole family changes,
relationships suffer, you lose connection with
the outside world and you get stuck with the
immediate needs of your sick child. You may lose
your friends, your job, your hobbies, yourself.
Kalparrin stops families from drowning by
providing education, support and respite.
Kalparrin helped me and my family immensely.
Kalparrin is located at Princess Margaret Hospital
so we could access help when we needed it the
most. Family Support Officers provided us with the
opportunity to talk, educated us on organisations
and support groups, directed us to funding options
and linked us with other families. We used the
lounge room to take a short break and have a
cuppa away from beeping monitors and later on
to have a safe place to rest while running between
appointments.
Luckily a child with special needs is a rare
occurrence in our society but when you are the
parent of a special needs child you feel very
isolated. Kalparrin runs events for all families to
participate in and meet each other - family fun
days - which we enjoyed a lot. Such days are
a great opportunity for our son to participate
in activities which he cannot access in the
mainstream community.
I feel very grateful to Kalparrin for providing my
family so much needed support during our long
stays at the hospital, education about respite
in the community and for the opportunity to
catch up with other mums I frequently see at the
hospital but never get a chance to talk to (mothers
weekend was a really great event). My eldest son
loves his time at Siblings Days and my husband
enjoyed meeting other dads during the Leeuwin
trip in Fremantle.
Kalparrin cares for such families like mine, I am very
grateful for the support given to my family.
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