What's CdLS?

Cornelia de Lange Syndrome, or CdLS, is a rare genetic condition that affects our sweet Emma.  Genetically, it is not unlike Down Syndrome; nothing we did caused it, nothing could have prevented it.  Individuals with CdLS are affected in a wide variety of ways.  For Emma, she was born with a hiatal hernia resulting in her stomach being up behind her left lung.  She also had a cleft palate.  She will always be much smaller than her peers, and she certainly has some developmental delays.  At this point, she is non-verbal.  She has been tube-fed since birth, and struggles with reflux. 

To learn more about this rare syndrome, click here to visit the CdLS foundation's website.