BENEFITING: Cornelia de Lange Syndrome Foundation, Inc.
ORGANIZER: Cornelia de Lange Syndrome Foundation, Inc.
EVENT DATE: Nov 03, 2013
In November 2007, Luke was born and we thought he was perfect! But just hours after his birth, the pediatrician noticed that Luke had many physical characteristics of a condition called Cornelia de Lange Syndrome (or, CdLS.) Pat and I had never heard of it, and had no idea where to turn for help.
Thankfully, we found the CdLS Foundation, which connects families, offers support and services, and taught us that raising a child with special needs was not a tragedy! There is no cure for CdLS but you can help ensure services and programs for families remain by supporting the CdLS Foundation—the only organization of its kinds in the country.
So what is CdLS? Cornelia de Lange Syndrome (CdLS) is a genetic disorder present from birth, but not always diagnosed at birth. It causes a range of physical, cognitive and medical challenges and affects both genders equally. CdLS does not discriminate—it’s seen in all races and ethnic backgrounds. The occurrence of CdLS is estimated to be 1 in 10,000 live births.
CdLS is not a “one size fits all” condition.
As with many other syndromes, individuals with CdLS strongly resemble one another. Typical facial features include thin eyebrows that meet in the middle, long eyelashes, a short upturned nose, and thin downturned lips.
Other characteristics include low birth weight (often under five pounds), slow growth, small stature, and small head size. Other features may include excessive body hair and small hands and feet. Common medical issues include gastro- esophageal reflux disease, heart defects, seizures, feeding difficulties, vision problems, and hearing loss. Limb differences, including missing arms, forearms or fingers, are seen in about 25 percent of individuals with CdLS. Behavioral and communication issues and developmental delays often exist.
Please consider helping me support the CdLS Foundation as I run 26.2 miles for the first (and probably only!) time! :-)