Tuberous Sclerosis Australia Reach Out Magazine October 2016

Information
Fundraising
Brainwave, supporting
children with tuberous
sclerosis complex
Within a few hours of coming into the world Hamish Green
was rushed to ICU, he was suffering violent seizures and
something was not right. Hamish’s mother, Kate Green and
her partner Solomon then waited the agonising 48 hours for a
diagnosis and after intense neurological surgery on the infant
a diagnosis was received, their beautiful new born son Hamish
had tuberous sclerosis.
Initially the diagnosis was isolating for Kate and her family
as they learnt about and worked through the challenges that
come with TSC and a special needs child. Over time Kate
joined a number of support groups that helped her connect
with other parents in carer roles and it was through these
networks that the family were first introduced to Brainwave.
Brainwave is a Melbourne based charity providing
financial, emotional and social support to families who are
caring for children with neurological conditions such as
tuberous sclerosis, brain tumours, acquired brain injuries,
stroke, childhood MS, cerebral palsy, epilepsy, muscular dystrophy
and more.
Brainwave currently provides more than 800 families across
Victoria and New South Wales with practical help to improve
their quality of life. This includes funding for those struggling
to afford necessities – common when one parent
stops working to care for a sick or injured child – such as
rehabilitation and mobility equipment (eg wheel chairs,
home modifications), ongoing therapy (such as speech
therapy, hydrotherapy), and under special circumstances,
household finances (from rent payments to
utility bills).
With a focus on the whole family, not just the sick
or injured child, Brainwave offers practical support to
help families get children out of hospital and back home as
smoothly as possible, funds essentials not funded by others,
and provides ongoing help to families whose lives have been
turned upside down.
Recently, this focus has further evolved with the development
of the Bear Essentials Pack, a care pack distributed in both
the Royal Children’s Hospital and Monash Children’s Hospital
to families who find themselves in the neurological ward for an
extended period of time without the basic essentials. The bear
essentials pack includes toiletries, vouchers and activity books for
the children. Each pack also contains a teddy bear, created as a
legacy to Luke Ryan, one of Brainwave’s members who was sadly
lost in 2013.
Brainwave also hosts regular, free camps and events for
families, siblings and sick kids to break the cycle of isolation many
families experience and provide some much needed fun and stress
relief, as well as a network of families who understand their challenges
in a supportive and non-judgemental environment.
Hamish,
now eleven
years old has attended
a number
of Brainwave’s
Christmas parties,
hosted every year at
the iconic Luna Park in
St Kilda, as well as a couple
of the Kids and Sibs days, an
event created specifically to
include the siblings of special needs children. General Manager
of Brainwave, Caroline Scully explains, “for siblings life can be
tough when their needs inevitably take a back seat and the Kids
and Sibs events provide these siblings with an opportunity to not
only bond with their brothers and sisters, but also access to other
children who share similar experiences.”
Brainwave is currently accepting applications from families
in Victoria and New South Wales with children with neurological
conditions such as tuberous sclerosis and are looking for financial,
emotional or social support.
For more information, to register your interest, or to find out
more about Brainwave’s services: http://brainwave.org.au/
Snapshot
Our fundraisers around Australia. If you have a community event coming up
and want to raise funds for TSA, please email chelli@tsa.org.au or call us on
1300 733 435.
SA – GP runs in Clare Valley Half Marathon,
April 2016
Dr Jessica Smith is a GP who provides medical care to people with
an intellectual disability. Inspired by Tori, one of her patients with
tuberous sclerosis, Jessica ran in the recent Clare
Valley half marathon as a TSC
Hero. Her campaign raised over
$2,000 and much needed awareness
of TSC in her local community
through her medical centre and a
radio segment.
VIC – Logan’s High Tea,
May 2016
Jessica Nicholson held a high tea in Euroa,
Victoria, in honour of her son Logan. Her
local community came together and raised
more than $600 for TSC research, bringing
Jessica’s campaign to over $1400.
Logan
Dr Jessica Smith
Jessica Nicholson
Dr Jessica Smith
Miranda's trivia night
QLD – Miranda’s trivia night, June 2016
Miranda, Tom and Kerri held a Brisbane trivia night, Saturday 4 th
of June 2016 to raise awareness of TSC and also $7,981.50 for
TSA. Miranda, who lives with TSC, wanted to do something to raise
awareness and this was a great achievement.
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Reach
Out
OCTOBER 2016 ISSUE 104
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