The CdLS Blog

Meet Cambria!

Meet Cambria!

Mark and Lyndsee F., Cambria’s Grandparents  Cambria is 14 years old, 3’10", and 40 pounds. The doctor who delivered her was the first to mention CdLS. She was medevacked to Tucson Medical Center, where they formalized her diagnosis, gave her a feeding tube, and were...

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Meet Dorian!

Meet Dorian!

Lisa T., Dorian's Mom  On January 17, 2001, Dorian was diagnosed with CdLS after her pediatrician noticed that she had only gained four pounds since birth despite being breast-fed. Despite not showing any limb abnormalities, Dorian's slow growth raised concerns, and a...

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The Mild Side of CdLS

The Mild Side of CdLS

If you’re new to the CdLS Family you’re probably very interested in learning whether your child with CdLS is mildly, moderately, or severely affected. The following article, written by Dr. Antonie Kline, CdLS Foundation Medical Director focuses on the genetic...

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A Guide for New Families

A Guide for New Families

By: Family Services Whether the words “Cornelia de Lange Syndrome” are new to you or have been the focus of many hours of exploration/investigation/contemplation, we welcome you to our Foundation. However you choose to contact us -- by phone, letter or email -- you...

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Meet Elijah!

Meet Elijah!

By: Sharonza P. Elijah may be smaller than other nine-year-old kids, but he is big in personality, energy, wit, kindness, and snacks. Elijah is a great help to his classmates at school. He is very observant and quite mischievous. He enjoys getting into anything and...

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Meet Kalani!

Meet Kalani!

By: Gabriella, Kalani's mom Kalani just turned 1 in July! We recently got his diagnosis in June. He has several GI issues, growth restrictions, and slightly delayed development. We are learning more and more about CdLS every day. We often contact the foundation, which...

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