Profile
In the spotlight...
Kids
Zone..
TRY THIS!
Perth’s City to Surf is 12km. How did
you manage?
The first 2kms I thought: ‘This is totally not
doable!’ But then somehow you just get into
it and it was really enjoyable. The last 2kms
I had a big adrenaline rush and I was nearly
crying. We raised $4,667. We all went out
and celebrated afterwards. Anyone I could
get an email address for, I emailed [to
sponsor me]. Local businesses. Australian
celebrities. Matt Moran from MasterChef
donated, and Tommy Emmanuel, the
Australian guitarist.
How did you decide which charity
to support?
When William was diagnosed in August
2008, I thought maybe that’s where my life
was meant to go – helping other people and
raising money for Epilepsy Action Australia.
It happened to us for a reason and we wanted
to turn that into a positive rather than a
negative. I want to raise money and also
raise the profile because a lot of people with
epilepsy don’t even know that Epilepsy
Action Australia’s there – and they’re so
good!
Do many other people have the same
disorder as William?
He has Sturge-Weber syndrome, a really rare
brain condition. There are only three people
in Western Australia with it that we are
aware of. Everyone’s different but they
usually have developmental delays and
sometimes intellectual disability. His
14
Epilepsy360º - December 2009
When did you realise he was having
seizures?
When he was six weeks old he stopped
breathing and went blue. We rushed off to
hospital in an ambulance. They thought it
was a reflux episode. But at four months old
he did it again and it turned out it was
actually a seizure. He would stop breathing
for a full minute. It was so terrifying. He
couldn’t see till he was about six months old.
We thought he was blind because he has
lesions in the occipital part of his brain. The
medication was gradually increased and each
time he got a little better.
What prompted you to contact Epilepsy
Action Australia?
I looked up the Epilepsy Action Australia
website. It’s really helpful. When it first
happened, I liked the section that explained
different parts of the brain. I wrote down
everything I was wondering about. Then I
knew what the doctor was talking about
without guessing. When you look up
Sturge-Weber on the internet, it’s all bad
news. Epilepsy Action Australia’s website is
more factual. If there are stories, they’re
positive ones.
Which support services have you received?
After the Epilepsy: Top of Mind Symposium
[in Perth in November] we met with Louise
Clarke, an Epilepsy Action Australia service
provider. My family came – my parents and
my in-laws. Louise explained epilepsy, and
showed William’s grandparents what to do if
he had a seizure and encouraged them to
learn first aid. It was good as a refresher for
us as well.
How important is William’s Seizure
Management Plan?
William stops breathing. So it’s pretty
important that everyone knows what to do
What does it mean to you to have help?
I feel confident now that the twins are old
enough that they can stay at their
grandparents’ house for the night. It means I
can go out and have peace of mind that they
know what to do; they’re not going to panic.
I can go out and actually enjoy myself rather
than having to ring home every hour and
make sure everything’s okay.
Will more support be needed as the twins
grow?
I rang the daycare centre the other day about
getting the boys in there and was surprised
that they hadn’t even had that sort of training
for seizures. I said to them, ‘Would you
consider it if the boys went there?’ They said
definitely. So it’s good to know that if they
go to childcare, there’s someone to help me
out with that as well.
How else are you volunteering?
I helped with promoting the recent Epilepsy:
Top of Mind Symposium; I emailed the
community newspapers around Perth.
Anywhere I go, I generally take whatever
fliers or brochures I’ve got that can help
Epilepsy Action Australia get the word out.
I’ve been delivering pamphlets and epilepsy
posters around Princess Margaret Hospital in
the neurology section and the phsyio section.
I’m also really looking forward to working
with the organisation on some bigger
projects next year.
Give it a try next time you
have eggs for breakfast!
TRIVIAL TRIVIA
Summer days
The warmest summer day temperature
ever recorded in Antarctica was 15°C
and it happened on January 5th, 1974
at Vanda Station, Scott Coast,
Antarctica. Brrrr!
PUZZLED
Jokes Galore!
What goes around the world
but stays in the corner?
Why don’t ducks tell jokes
when they fly?
What do monsters make
with cars?
Traffic Jam
When Rebecca Raisin ran in the Perth City
to Surf this August, she raised close to
$5,000 for Epilepsy Action Australia. Now
she’s taking further steps towards
volunteering for the organisation, inspired
to help others by the heartache of her
18-month-old son William’s diagnosis with a
syndrome causing seizures.
straight away. When to call an ambulance
and how to give the emergency medication
Midazolam. It’s always in the baby bag. I
also learned how to safely store the
medication and protect it from light so it
works when we need it.
Because they would quack up
Volunteer and mother
of twin boys
schooling might be affected. As far as his
seizures go, he’s had a couple of different
types but luckily he hasn’t had any since he
was diagnosed. He’s caught up quite a bit
developmentally as well.
A stamp
Rebecca Raisin
Did you know that a
hard-boiled egg will spin
but an uncooked or
soft-boiled egg will not?
Tell us what you think. Write to
Epilepsy360º/Kids Zone at
[email protected] or
PO Box 879 Epping NSW 1710.
YELLOW
PURPLE
BLUE
RED
ORANGE
BLUE
YELLOW
RED
GREEN
PURPLE
Look at the chart below and say
the COLOUR of the word, not
the word itself.
ORANGE
RED
PURPLE
BLUE
BLACK
BLACK
ORANGE
GREEN
PURPLE
BLUE
Brain-fo
A “no-brainer”!
Some primitive animals
such as jellyfish and
starfish have no brains!
They have a complex
network of nerves which
respond to things, but
they cannot think about
things like we do.
Why is it so difficult? Because the right half of your
brain is trying to say the colour, while the left side of your
brain is trying to say the word. Test out your friends!
Would you encourage other people to help,
too?
Even if you don’t want to do something like
running or holding an event, you can still
donate $5 or $10 a week to a charity. It’s so
easy to do. And it gives you a really good
feeling as well.
Don’t forget to get permission from your parents before sending in your name and contact details with your joke for a chance to be published!