|
Dad's Pages
Dad's
Journey
I promised my
son Jack when he was
only 6 hours old and only a tiny baby in the palm of my hand
that I
would be there to protect him and keep him safe
until he is man enough to look after himself
I
intend to keep that promise.
Dad's
page: My name is Trevor White and this page
has been designed with resources for Dad's trying to deal with the
issues of
watching our children struggle with genetic disease.
I am not a
shrink or social worker or any bullshit like that, I am just a bloke
who knows how painful this has been for me. This page is here to
let
you know that there are people and resources out there to help get you
through
this and
to help support your family and children when they need you the
most.
My son Jack has
a big beautiful SMILE, this
SMILE keeps getting BIGGER EVERYDAY and that
drives me forward to finding a cure and saving my son.
But where do I
start. I started this website to try and answer the
unanswerable questions. You may ask what are you talking about, but
just
think about everytime you ask a simple question to one of the many
specialists
you visit. In my experience, their answer normally leaves me with
many
more
questions .
There are so
many issues to try and deal
with at any given time. I've only been
trying to
get my head around Jack's condition for a little over 5 years
now. It was not long ago, when an australian Genetics specialist
told me that my son may
only have a
couple of years
to live. Test
after test, doctor's
appointment after doctor's
appointment - still with little idea of what the diagnosis is and even
fewer answers, my wife
finally managed to get an appointment with this genetics specialist
from Sydney.
My wife and I
sat patiently in this
outpatient clinic in Newcastle, listening to
him. I
remember that
appointment like it was only a moment ago, it will forever be burned
into my memory, like a reoccuring nightmare.
We were in the
doctors' Newcastle rooms.
Jack was sitting on my lap
looking up at me with his beautiful smile
and cheeky eye's and I was making a joke of his chunky thighs and short
stature and saying that he was going to make a great rugby player one
day with his solid little legs.
The very next
words to come out of this
specialist was, he said "I don't
expect your son to live beyond 3
years of age". At that moment you may as well have cut
my
heart out. I have never felt such pain. My breath was taken
away,
I felt myself choking on thin air, not believing this person but
knowing there must be some truth to his statement or why would he say
such an awful thing? I really just wanted
to just kick
the shit out of this person how dare he say such a
thing to us! Where
was his evidence to prove this statement, this horrible outcome?
To base this
statement only
on what he knew at that time and what he has been exposed to in the
past. How can he
know
such a
thing? The truth is that he and nobody else knows, what the future
holds for our
children. They are not God, however too often like to make statements on his behalf and without his knowledge. I have now been told this same thing several times by young smart ass doctors with no idea. We are entitled to believe our children will live full and
complete lives and outlive us as their parents.
If we hold on
to that belief we have the
opportunity to change the
future and give our children their right for life.
This has been
the longest five years of my
life. I don't really recall
those first couple of months after that specialists' statement.
My life has
been changed forever, it has been a very painful road to have travelled
to this point, I feel as though I have aged ten years in such a short
space of time. I have certainly grown as a man, I have fought long and hard to see my son survive the many issues that have tried to take him from us and he is now doing very well, attending school and getting stronger by the day.
I now sit
writing a website to try and help
other
people know they are not the only ones struggling to deal with this
burden we carry.
This journey we
take is just one day at a
time....
However, I
know collectively we will
find a cure to mitochondrial disease,
Be Active In This
Fight!
The only
form of defence to protect
our
children is to attack the threat,
the threat is 'doing nothing'
(apathy).
Choose
to take ACTION and take CONTROL for you and your children, by
developing the
knowledge, skills and
attitude to regain the
initiative.
Fight
Mitochondrial Disease and
Help Find a Cure
We must
join
forces and use our collective energy, drive, determination and
resources to find a cure.
Individually
we remain unheard,
Together
we become an unstoppable Global Force!
Together we
will Discover or Develop a cure
and save our
precious children
Together we
have a voice
We Must Demand
a Cure
I know why I started this website because I cannot standby waiting for
my son to die when I know there is a cure to be discovered
I know this in my gut...
You
Must Feel and Know The Same thing
We cannot count on our politicians or the church or even the many
members of our scientific
community to save our children. There are many well meaning people and
dedicated people out there however, there are also many who appear to
only throw mud at each in an academic free for all
in a bid to score points when real lives are at stake.
JOIN
ME IN THIS
FIGHT TO FIND A CURE BY 26 SEPTEMBER 2015.
YOU HAVE THE SKILLS
WE NEED
Contact us
anytime, visit our contacts page
Should you
need
some professional assistance to regain your focus and start fighting for a cure
consider visiting the
following site or ring a mate have a beer or three, cry on his shoulder then get back on track and help me find a cure:
Beyond
Blue
Jack with big goals
|
