May 13 to raise awareness of syndrome

Published 11:48 pm Monday, May 1, 2006

On May 13, people around the country will recognize Cornelia de Lange Syndrome, or CdLS, Awareness Day. For my family, this day has special meaning because our child, Jessica, has CdLS. Each day, our family faces challenges — some little, some big — but nonetheless, we marvel at how Jessica has overcome so much in life and taught us so much about love.

Researchers believe that for every child diagnosed with CdLS, 10 children with CdLS live without a diagnosis. This means some 20,000 children remain without the critical medical and support services that can greatly improve their quality and length of life.

You can help find these children. Please go to www.cdlsusa.org or call the CdLS Foundation at (800) 753-2357 to learn about the syndrome and its physical manifestations. As with other syndromes, individuals with CdLS strongly resemble one another. Common characteristics include small stature; thin eyebrows that meet in the middle; a short, upturned nose; low-set ears; thin, downturned lips; and, in some cases, limb differences. Mental retardation varies from minor to severe.

CdLS does not discriminate. It affects people from all ethnic and socioeconomic backgrounds, in every country in the world.

This May 13, help us find every child and help every family touched by CdLS.



Mike and Patty Smith

CdLS Mississippi Awareness Coordinators

Collinsville

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