I can still remember walking out of Children’s Hospital on a September afternoon in 1998. My brain struggled to process the geneticist’s diagnosis that my 22-month-old daughter had Cornelia de Lange Syndrome (CdLS). Caused by a rare and random genetic mutation, CdLS affects growth and development resulting in small stature, (often) limb differences, developmental delays, autistic-like behavior, and many other issues.

On one hand, I felt relieved to know it wasn’t my fault that Anna was so small. On the other hand, I had no idea what the future held or even how to go about getting her started with the recommended therapies. However, on our way out, an intern had handed me a few printed pages taken from the CdLS Foundation website.

Those pages changed our lives.

Instead of floundering hopelessly, we were able to talk to someone who could answer our many questions. Through the CdLS Foundation, we gathered volumes of accurate and up-to-date information about the syndrome and connected with other families in person and online. Eventually, we donated blood to aid in research and participated in other studies … and this summer, I’m speaking at the National Conference in Chicago.

The CdLS Foundation exists because others gave their time, energy, and money. And those that have been supported, in turn pay it forward. They hold golf tournaments, which can be prepared for with products that would also be a great gift for dad, and run marathons. They plant wild flowers, host teas, organize hoards of leaping school children, and plan garage sales to spread awareness of CdLS and raise money for the CdLS Foundation and ongoing research.

While tomorrow (May 12) is National CdLS Awareness Day, I’m very aware that there are many other important organizations and causes we can get involved with. (Caution: make sure you do your research and know where your money is really going.)

Supporting an organization is not about a cause as much as it is about helping the very special families affected.

What about you? What special families do you know of? What causes or organizations are dear to your heart? How do you support them?

Helping Special Families
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