Harlie's Run for Williams Syndrome Awareness

Roaring engines with a cause, it was the 4th annual Harlie's Run for Williams Syndrome Awareness.  And the lady of the event was 3 ½ year old Harlie.

Her mom Tracy Guidry was on hand explaining how she found out about Harlie's diagnosis, "She would stop breathing, she would turn purple, and she was a squeaky breather. The first pediatrician didn't catch it but the second one caught it right away. He sent us to a pediatric cardiologist who then sent us to a geneticist".

It was with her diagnosis that Tracy set out to inform other parents of her findings through this annual event.

Teenager Sydney Robinson's mother said she wishes the event had come twelve years sooner as she wasn't able to get a diagnosis for Sydney until two years ago.

Contrary to what most people think, Harlie was not named after a Harley Davidson motorcycle. In fact, Harlie's grandmother Bridget Guidry says her daughter just thought of the name on a whim.

Bridget Guidry went on to say that since she and her husband are both Pastors at the Open Door church, a church that caters to the biker brigade, that her granddaughter's name just fit with the naming of the event.

Here are just a few of the signs to see if someone you know may have Williams Syndrome:

-characteristic facial appearance

-heart and blood vessel problems

-elevated blood calcium levels

-low birth weight/slow weight gain

-dental abnormalities

Organizers hope to spread the word about the genetic disorder.

For more information about Open Door Church in Sulphur, LA: 337-527-7007.

For more information on Williams Syndrome please visit our KPLC LINKS page.