Brandon
WORCESTER, SOUTH AFRICA
Brandon,
now 2 years and 6 months old, was diagnosed with GT when
he was 4 months old. As any parent would be we were devastated
and shocked as we have never heard of it before and the
little that the doctors knew were scary as well.
Well
after nearly one and a half year on this site I’m
glad to say that we’ve learned a lot, cope a lot more
and living with it till this point. Although there is many
trauma going with GT it’s already a lot easier as
in the beginning when we knew nothing at all.
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Brandon’s
main problem is the nose bleeds. He already had 4 blood transfusions;
luckily it wasn’t necessary for a palette transfusion yet.
But he was submitted to hospital more than ten times already.
To prevent much trauma for Brandon I try to stop the bleeding
myself first at home with a Vaseline “plug” that I
put up his nose. It helped a few times, but not always then we
need to go to the ER. And as discussed many times GT is unpredictable.
Not one bleeding episode is the same. And then we don’t
talk about the peoples reaction when Brandon is in shorts and
we are in a public place, I just told myself that I don’t
care what people think of it, if someone approach me and ask me
why he is full of bruises I feel so happy to tell them about GT
and this is how the word is spread, and immediately peoples reaction
and opinions change.
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Apart
from all this he is as normal as can be. He goes to a normal
day care that takes really good care of him, giving him
his medication and phone me immiedlty if there’s a
sign of bleeding, and then I don’t say how many bruises
his got, but he enjoys life like every other boy in the
world. For sure there are limits, but you keep positive
and motivated and live life to the fullest and make it easier
for him, and I know now as all the parents told me in the
beginning it’s getting easier as they grow older.
And through the whole experience I personally can say that
me as a parent of a GT child came so much stronger out on
the other side. |
I know the
hard part is still coming when I have to explain why he can’t
do this and that like his friends does, but I’m sure we
can replace it with something he can do and maybe be excellent
in.
As for the
other GT moms and even adults with GT on this site, I want to
thank them for all the support and advise and the motivation.
It’s great to know there are people going through the same
situation as we do and can rely on each other for help and advise.
And thanks
again Helen for this site. I think everyone will agree that she
and Chris are doing a super job with this site…..
Take care
Tina
Brandon’s mom
e-mail
Tina
Hi
there!! At last I found a site who support this disease.
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We
are from Worcester in South Africa. My boy, Brandon, now
1 year and 3 weeks old. was diagnosed with Glanzmans disease
when he was five months old. We discovered it when we saw
that he 's got like blue spots every where and the slightest
bump or touch will leave a blue spot.
We went
to Tygerberg hospital where they diagnosed him.
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I don't know
where it came from because neither my husband or my family have
a history of this.
Well our first
experience was when he was seven months old. He was in his walking
ring when he fell from stairs and landed on his face. His teeth
cut his lip and there was severe bleeding. It just wouldn't stop.
So we went to the hospital in Worcester and they told me there
was no medicine to give to him.
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they had the report from Tygerberg hospital. I was devastated.
So the following morning I phoned the professor who did all
the test on Brandon and he phoned my GP for a prescription
for medication to stop the bleeding. After he took the medicine
he stopped with the bleeding. He bled more than 16 hours non
stop. |
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At this stage
I made peace with the disease, but no where there is a support
group to help me. I want to know how to tell my baby boy he can't
climb that obstacle or he cannot play rugby. Tell me how do you
do that to a boy!!!!
Loving Mom
e-mail Tina
