oğuz kağan
April, 28, 2010. There was a baby scream, and I saw him, my little boy, my little
angel was born. Nothing was important to me anymore, but my little son. The doctor
said, “There is a birthmark at his eyelid and forehead, but that’s not so important
because when he grows up the birthmark will be erased.” I said, “Who cares?..My little
boy is with me, who cares the rest..will erase or not.” She didn’t tell me about the risk
that my son can have a rare syndrome called Sturge-Weber. She also didn’t tell me that
we had to have an MRI about the birthmark.
When he was six months old, there’s something happened that I can’t understand.
He had a cold and sore throat. Suddenly I realize that he was trying to gulp. I think
he had sore throat because of his illness and tried to nurse him, but he didn’t react. I
realized that his leg was shaking. We took him to the hospital in minutes. I was crying
and trying to realize what was happening to my son. When we went to the hospital
Oğuz Kağan didn’t have any reaction to anything. The right part of his body wasn’t
moving, the left part was flopping like trying to rescue himself. His head was just looking
to the left side, not moving to right side. The doctor looked at him and asked me if we
had any MRI. I said, “No.”
Then she began to tell the other doctor that my son had a birthmark at the left
side of his face, and the right side of his body had cramp. I thought, “It’s none of your
business that my son has a birthmark or not, just do your job!” How could I know my
son had a rare syndrome beneath that birthmark? That night my son was at the same
situation about 2 hours and the doctor didn’t do anything for him. She just said, “He is
between asleep and awake, and it’s just about his sore throat and cold.” After 2 hours
my son was good, and the doctor let us go home.
The next day we decided to take Oğuz Kağan to the university hospital which
is bigger than the other one. When we entered of the door of hospital’s emergency
department, and told doctors about last night, the doctor asked if my son had any
MRI about his birthmark or not. And she asked if the other doctor did anything while
my son wasn’t connecting with us. At this time I understood that something bad was
happening. She told us about the risks of Sturge-Weber syndrome. I didn’t hear about
this syndrome before, I even didn’t understood how to spell its name. That moment was
too scary for us. I was just crying and angry at other doctor who told us that my son
was between asleep and awake.
Now, Oğuz Kağan is eighteen months old, thank God, his seizures are under
control by two different medicines. Until now he had just a few seizures that we can
count. He’s full of energy, full of life. He smiles all the time. I see a little man in him,
who is so strong against his syndrome, who is enjoying every moment of life – like
joking with life. He taught us to be strong, to be hopeful.
Our story began like a nightmare, I hope it will continue with the success of my
little angel.
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“Our story began like a nightmare, I hope
it will continue with the success of my
little angel.”
The Sturge-Weber Foundation