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I am Rayven

This is my Story:


 

I’m 8 years old, and I was born with a genetic condition known as Cornelia de Lange syndrome. My family and I are members of the Cornelia de Lange Syndrome Foundation, and we go to gatherings where I get to play with friends.  It’s fun to meet the other kids.

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I have Cornelia de Lange Syndrome.

 

Cornelia de Lange syndrome (CdLS) is a genetic disorder present at birth but not always diagnosed at birth.  It causes a range of physical, cognitive and medical challenges.  It affects both genders and is seen in all races and ethic backgrounds.

  • The features of this syndrome vary widely among affected individuals and range from relatively mild to severe.
  • CdLS is estimated to occur in 1 in 10,000 live births.
  • Typical facial features of individuals with CdLS include thin eyebrows that meet in the middle; long eyelashes; a short, upturned nose; and thin downturned lips.
  • This syndrome is characterized by slow growth before and after birth, intellectual disability, and skeletal abnormalities.
  • The syndrome takes its name from the Dutch pediatrician who first identified it in 1933.

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