Families Raise Awareness About Rett Syndrome

By DAN MANNARINO Staff reporter

12:23 a.m. EDT, October 16, 2011
NEW YORK (PIX11)—
Imagine you have thoughts, hopes, and dreams but no way to actually express them. It's a rare disorder called Rett Syndrome that affects young girls. Worldwide, 20 girls are born every day with the disorder.

Dr. Sasha Djukic says the disorder doesn't begin right at birth. "Imagine you have a child who is 1 year old, happy and healthy, and then the disease starts, in a matter of a few months it drops the ability to speak, use her hands, walk," says Djukic.

Abby Diamond is now a beautiful, 8-year-old girl. At age 3, she was diagnosed with Rett Syndrome and stopped walking and communicating with her family.

The problem is, not many people know about the disease, so not many people donate money to research.

So today, under perfectly blue skies, families gathered on the steps of the Tweed Courthouse in Lower Manhattan and in other locations around the globe to raise awareness about Rett Syndrome.

"Climbing steps is a symbolic gesture, bringing you upward and forward," says Djurik.

In an inspiring sight to watch, the girls slowly but surely climbed the 30 steps. Joining them were members of the New York City Fire Department who, in some cases, carried these brave girls to the top.

"The girls are good girls, pure in nature, friendly and trapped inside these bodies," says Abby's father, Erick Diamond.