KATHRYN DOTZAL |
I've certainly had many "why me?"
moments over the years. The thing that gets to me the
most is how quick people are to pass judgment and make
assumptions about me based on the way I look. I have to
work twice as hard as everyone else to receive respect,
and it's incredibly frustrating.
However, in these moments I just tell
myself to "stop complaining." I tell myself that I am
incredibly fortunate to be where I am today, and I think
about all that I've been able to accomplish- more than
many "normal" people ever will. Basically, I just try to
stay positive. My body may seem like a cage at times,
but at least I have my mind to make up for it :)
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SHEA FREEMAN |
Hi my name is Shea Freeman. I was
born with Crouzon's syndrome, cleft lip and pallete, and
another craniofacial disease. When I was 17 I had the
halo attached to my head during the summer before my
senior year. It was a very rough process and I had to
wear it for 11 weeks (the whole summer). They broke my
upper jaw into three and repaired it to give me an
under-bite and pull mhy face forward. I'll admit, it
caused a strain on me mentally for the first 2 weeks,
but after a while I continued my summer without any
problems. I was fortunate enough to have a brilliant
doctor by the name of Mutaz Habal, who has been a mentor
to me and has performed over 50-60 surgeries on me since
I was 2 weeks old. I am 20 years old now and I can say
that the apparatus has definitely improved my smile
along with the structure of my face.
Although it didn't completely change
my look, it doesn't really matter to me because I'm just
as normal as the next person and now i feel that way. I
never had a problem talking to people with it on. In
fact, I met a gorgeous girl while wearing it and we
dated for 2 years. I was unaware of the website and when
I came across this I felt like I had to say something.
Most people go their whole lives without telling the
world how they feel and for kids with Crouzon's it can
be very difficult to do that. Sometimes you can feel
like you don't fit in or you're not normal or you don't
even matter to other people, but I'm very proud of who I
am and I wouldn't change a thing about me if I didn't
have to. People with Craniofacial syndromes are not
mistakes, or mentally handicapped, or sad stories. God
made us this way because he wants us to get past it
because he made us stronger than normal people. I don't
wanna sit here and try to be a hero, because I'm not.
I'm a regular guy who just so happens to have 3
syndromes that do not correlate with each other (it's
been said to be a medical miracle that i lived), but I
do wanna change the way people look at us and my only
advice to parents or siblings or friends of someone that
has these syndromes is simple: Just let them be
themselves and don't shelter them. Remember, what
doesn't break you, makes you. And I know in my heart
that every kid with Crouzon's knows that and they all
have the ability to do something extraordinary. All we
gotta do is spread the word and educate people on it.
Well I know this has been a rather long message, but I
hope people read this and tell others about it. Thanks
and God Bless
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KELSEY CHARLES |
My daughter's name is Kelsey and
she's a beautiful 7 yr. old that was born with Crouzon's.
We are "RED survivors" with this being her, upon
removal, 17th surgery. This experience was not exactly
the "minimal pain" version we were told about. She hurt
mostly upon cleaning the sights (very sensitive) and at
night. The pain the first several weeks would wake her
at night and because she got thrush in her mouth, giving
pain meds was extremely difficult. I prayed my heart out
on ways to help her. She tried to be so brave and laugh
when she could, but I new she was struggling with pain.
One side of her head in particular gave us a good bit of
trouble with a topical infection and granuation tissue.
She will need scalp reconstruction on that side because
she's been cut from ear to ear three times. This story
sounds really negative but I honestly felt like our
surgeon did not prepare us for our particular situation,
and down played it. Kelsey has proven that she is tough
and has always rebounded quickly from all other
surgeries but this one was different and I felt that it,
as usual, was left soley up to me. Our results were good
and she has the nasal passageway she needs, but found
out her adenoids and tonsils will have to be removed as
they are blocking the air (#18). I would like to say
that it is a blessing that surgeries like this exist in
our lifetime. We just need to be better informed about
other possibilities other than protocol. We can handle
it." - Kelly Charles |
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HOLLY |
I have the RED on
right now and are getting it off before christmas.
Uuumm what can I say. the RED is not painful, but is
just annoying. You can't run around, you can't eat
or sleep that well either. I have stopped turning
the screws and have 7 weeks to go!!! If anyone is
going to have the RED but is not sure sbout it, DO
IT!! Because its totally worth it. But remember,
children with crouzons ARE beautiful and if some
people are to dumb to see that then they are the
idiots, not you
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If you want to help your fellow craniofacial community
members and share your experience, you would be a hero!
Please shoot me an email at
Lia@REDsurvival.org
so we can get started! Hope to hear from you soon! |
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