My skin
might bleed a lot or
be very scary looking.
That's normal for me.
People might have
a second look or say
something under their breath,
I couldn’t care less.
My life
expectancy was nothing
more than two to five years.
But I break the rules.
There's never going to be anybody
like me.
I’m Dean,
I'm 43 and I live
with Epidermolysis bullosa.
It's commonly known as EB
or cotton wool babies.
It's a very rare
genetic skin condition.
I've still got the
same skin as everybody else,
but it just doesn't have
the binding anchors that hold
all the layers together.
So any sort of
movement will create
a friction-type burn, kind of like
sandpaper rubbing against each other.
I’m able to sort of
push the pain
to the background
until such times that you
take a step just the wrong way
and you’re sort of frozen
in excruciating
pain for a second
or two.
My version is one of the most
severe versions of EB.
The doctors indicated that
it would be better if I passed away
sooner rather than later,
because the older I survived,
the more painful
and more
debilitating life was going to get.
For a 12 month
appointment, it was always
marked with an asterix
to call through and check
I was still alive.
I was wheelchair bound
through school.
I needed tube feeding.
It wasn't until I was
in my teenage years
that it became pretty obvious
that, to me,
I was going to survive, but
I had no real idea
what my future would hold.
I found out
in the year 2000 that I was selected
to carry the Olympic
torch.
Sport has always been
a natural thing to me.
I love just about any kind of sport.
I was still wheelchair bound
through those years
but I kept thinking
it would be pretty cool
though to walk with the torch.
I had basically
six months.
The physio said,
“it was impossible”.
My close
circle of friends
said, “if it's something
you really want to do,
you always work out ways
to do it”.
So we got a treadmill.
Slowly,
I became strong enough
to be able to stand on the treadmill
and walk on the treadmill.
And so literally
with about four days left
I decided, “yep stuff it.
I’m going to walk
with the Olympic torch.”
I turned up the back street
heading out of Kingaroy thinking
it'd just be me and my family.
And I was basically the entire town
was there to cheer me on.
It's still one of the most
magical days of my life.
It's the
first and only time
I can ever recall walking
completely pain-free.
In 2001,
I was in the best
health of my life.
I decided to take
on the biggest challenge
I could think of, which was moving to
Brisbane to set myself
up, to live independently.
Didn’t count
on all those sort
of negative preconceived
ideas of me with a disability.
And people in
the community were very scared of me.
Nobody would
give me
even the opportunity to
give them my resume and show them
what I was capable of doing.
I fell through every crack in
the medical world because I had
then become too independent to
then be classed as being disabled,
and then I was too
disabled to be independent.
I moved back home
thinking, “well, that's it.
I'm just going to stay in the bedroom
and not think about having these
grand ideas.”
That was a really devastating
period in my life.
I was at one of my
friend’s places,
it was a few years
after the Olympic torch,
the two of us got into a competition
to see who was stronger.
And I had never done any actual
gym exercises or anything like that.
And he said, “do
you want to see
what you're capable of doing?”
That first day
in the gym, unassisted,
I lifted
my body weight on the bench press and
we just sat back in amazement.
I'm lucky to be able
to mentally control the pain
and then sort of put mental
blockers across it.
Now, I’m classed as one
of the strongest power lifters
people have seen.
My record is lifting 150 kilos,
well over double my body weight.
[CHEERING]
You show them the video
and their jaws drop.
They can't believe it.
Two years later,
job opportunities
arose in Brisbane and we moved back.
I've loved every minute of it
since.
It's just normal
to me that people might
have a second look or say
something under their breath.
I couldn't care less.
I break the mould and there's
never going to be anybody
like me.
My job
these days is as a
motivational speaker,
from talking to
primary school kids that are dealing
with bullying issues
through to
some of the biggest corporations
in Australia and internationally.
I'm really passionate
about raising the awareness
for EB in Australia.
I never would have, in
my wildest dreams, imagined I’d
be in this position
that I am today.
I hope you've enjoyed my story.
What...
are we saying?
Thanks very much for watching.
I hope you've enjoyed my story.
There's links below to
learn more about EB.