Hi! My name is Kendra. I am six years old and have Cornelia de Lange Syndrome (or cdls). My syndrome is so rare that most people have never heard of it and there are many other children just like me who are undiagnosed. I hope that someday people will recognize cdls as easily as they do Downe Syndrome or other more commonly known syndromes. My Mommy, Daddy and me welcome you to my web page. We want to tell you a little about my life.

What is CdLS?

Cornelia de Lange Syndrome is a rare birth defect that causes delayed growth, small stature, and mental retardation (ranging from mild to severe). Children affected with CdLS have simillar facial features- eyebrows that meet in the middle, upturned nose, & thin, downturned lips, cleft palates, heart defects, upper limb abnormalities, siezures and gastrointesophageal reflux are some of the health problems associated with the syndrome. For more information about CdLS, contact the Cornelia de Lange Syndrome Foundation. They are an excellent source of support and information for CdLS families around the world.

Meet Kendra and Learn about her experiences

THE SPECIAL MOTHER

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. "Armstrong, Beth, son. Patron saint, Matthew." "Forest, Margorie, daughter. Patron saint, Cecilia." "Rutledge, Carrie, twins. Patron saint... give her Gerard. He's used to profanity." Finally, He passes a name to an angel and smiles, "Give her a handicapped child." The angel is curious. "Why this one, God? She's so happy." "Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel." But does she have patience?" asks the angel. "I don't want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that sense of self and independence that are so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make it live in her world and that's not going to be easy." "But Lord, I don't think she even believes in you." God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness." The angel gasps. "Selfishness? Is that a virtue?" God nods. "If she can't seperate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied." "She will never take for granted a spoken word. She will never consider a step ordinary. When her child says " Mamma" for the first time, she will be witness to a miracle and know it. When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations." "I will permit her to see clearly the things I see--- ignorance, cruelty, prejudice---- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side." "And what about her patron saint?" asks the angel, his pen poised in mid-air. God smiles. "A mirror will suffice." Written by:LINDA BAIRD NOVA SCOTIA

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