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You are visitor  since December 1998
Hi! My name is Katie and I'm almost ten years old.
I have a very rare syndrome called Cornelia de
Lange Syndrome or Brachmann de Lange Syndrome.
You can just abbreviate it if you like to CdLS. It's easier for Mommy and
Daddy to say that way too.
I was diagnosed with CdLS in September 1998 after
several years of doctors, test and questions. Now that my family and I have
answers it will aid in finding better resources for me. It has already
helped me to make a whole new group of friends from the CdLS Online Support
Group and the Cornelia de Lange Syndrome Foundation.
CdLS ranges from mild to severe or mild to classical. The Geneticist says I
have a mild version of CdLS. This is what he lists as my patterns of
malformations that lead to CdLS. I have excess body hair, low frontal hair
line, dark penciled eyebrows that meet in the middle. I also have a short
nose with anteverted nairs and thin down turned lips. On my hands my thumbs
are located differently then that of a typical child and my pinkies on both
hands are incurved. My second and third toes on both feet are connected.
I have mild to moderate developmental delays also. There are so many other
things associated with this rare syndrome so it's wise that you read several
different web pages like mine to see the true range of this syndrome with
children and adults who have CdLS.
You will come to see after reading about me and other children and adults
with CdLS how truly amazing and special we are. My Mommy hopes my story has
touched you, inspired you and most of all educated you on this rare syndrome.
You see it's so rare that many doctors have never heard of it.
Thanks for visiting my web page. Please share it with a friend and please
come back and visit me again.
My Mommy, Daddy, and I would like to say a very special thanks to Vicki for
designing Katie's Corner. Vicki is Mom to Marci who has CdLS and by the way
has her own web site that I'd love for you to visit. She would love it if you stopped by.
Thank you Vicki! What a special and talented lady you are.
We hope you enjoyed your visit to my Web page and have learned a lot.
Please
don't forget to sign my guest book. It really means a lot to us.
God bless you all.
To see the beautiful CdLS Pins Click Here
This page hosted by get your free home page
Some of the tubes used on this site were kindly provided by Wendellzmom
This web site is Copyright © 1998 Katie's MOM
Wonder
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