Hello friends and page-visitors, First, I'll thank Don to make it
possible to update this page. Some of you know my name, but I'll
tell you my whole updated-story.
My name is Mieke Maartense and I'm 18 years old with Apert Syndrome.
I'm living in 's-Heerenhoek, a little village on the southwest of
Holland. When I was born, 26th of February 1984, my parents and the
house-doctor saw, I was different then other children by birth. My
fingers and toes were fused, the palate was still open, the fontanels
still open and my yaws were standing otherwise. Nobody had seen this
before, so they brought me to the nearest hospital. There they didn't
know it too. But there was one doctor, who had visit the hospital that
day, who knew what's wrong. His name was Vaandrager and he was very
kind. He said it was possible to make fingers for me, close the palate
and the fontanels. He did. He closed the fontanels and the palate and
gives me fingers. Now I have 3 fingers on each hand.
When I was nearly 4 years old, I goes to a special school, a few hours
from our house and they brought me every day to school with a special
taxi. And every day they brought me back home. Doctors discovered, that
my hearing was not too good. They did some hearing-tests. I heard
beeping sounds and I must say "Yes" when I heard them. Another doctor
operates me for ear-tubes. I had many ear-tubes in my both ears and also
many earaches. But it was always a party when I could hear again.
Later, when I was 16, I had a hearing aid since that day I hear well.
School was going right. I met friends. Sometimes, when we walked across
the streets, little kids looked to me thinking:"What strangely." but I
don't make a problem of that. They'll looking? OK. But they didn't bully
me ever. When I was 9 years old, I had braces and glasses. Glasses I had
since my 6th birthday. The brace was not fine. It was a big cube, which
must set my yaws a bit better. I had it for 10 hours per day. Every time
I must go back to the hospital with a Craniofacial Centre, in Rotterdam,
a 100 kilometres far from our house. There was the same doctor who made
fingers and other things. There was a whole team of doctors who leads
me. They were all kind. After the cube-brace I had other braces (you can
see on the pictures on this page). Then, I was ready for a cranial
surgery in Rotterdam.
That was the 1st August 2001. Vaandrager leads it. They made pictures
and then they operate me. When I awoke, I was in the ICU. What's
happened? I couldn't see good and my nose felt like a big, hot tomato.
Vaandrager came every day. Also when I was back in my normal room. He
said I must eat soft things like pudding for 6 months. There were
elastics on my braces from upper-jaw to my down-jaw. My hair wasn't
shaved (only at the scar of the first cranial surgery) and I remember
the first time I looked in the mirror. My teeth were standing good and
my nose was beautiful. My eyes were pulled backwards, but in beginning
thick. Everyone was surprised for my new face and I was soon better to
go home, but REST. Then, weeks later, I went back to school. My friends
looked if I was "really Mieke Maartense".
Months later, I went back to the hospital. Vaandrager said he was ready
with me ad my braces may out over a month, he said. "Are you joking?"I
asked laughing. My braces I had for years. But it wasn't a joke. Now I'm
going to Rotterdam one time in two months. Only for check my braces. My
ears were better too. The ear-doctor was proud of the results of it. "I
want to see you after 6 months."he said. Say what? I had to go there
every month. That was very good news. In the nights, I didn't drool
anymore. As first in my life, I didn't "cut thick trees in the wood" as
we called the drooling. And my eyes were closed when I sleep. Before
surgery, they were still open and hurt in summertime. But now they
don't. The doctors had asked me for a next surgery: to split my middle
fingers and to make my thumb bigger. But I didn't do that. I'm happy I
can do most of the things I like to do like typing, writing and other
things. Since a half year ago, I'm a member of a rowing club near here.
And it's real great.
With love, Mieke Maartense