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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.




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