Jen Healan writes “I would like to nominate Anna Kate Frazier. She is a beautiful 2 1/2 year old who lives in Oconee county. She developed normally and then started lagging behind. Her family searched for answers. This year after genetic testing they received a devastating diagnosis of Rett Syndrome. A debilitating neuro-development disorder. Unless a cure is found, Anna Kate will never walk or talk. She most likely will have scoliosis and long QT syndrome which causes fainting and sudden heart failure. Her family is rallying around her and learning more about this rare syndrome to help Anna Kate have the best life possible. This is a most deserving little girl and family. They have had a tough year. Thanks for your consideration.“
We actually had to do this session in two parts. The first part, poor Anna Kate was getting sick, it was super hot out, the dress was itchy and it kept getting wound around her poor hands as she was trying to get them to her mouth to chew on them (Rett Syndrome girls typically develop their own particular hand patterns, which may include hand wringing, squeezing, clapping, tapping, chewing or rubbing.), which only served to make her super mad. So I called it and we rescheduled to give the sweetheart just a little time to get over the cold and for the weather to cool off. Part two was about 20 degrees cooler out and Anna Kate was much more patient with us. She has a very mischievous side to her and amazing eyes. She can’t talk, but there’s no mistaking what she wants, and when she looks at you, it’s like she can see right through you and into your heart. There’s an amazing little girl in there and I know her family can’t wait for the technology to help her show everyone.
Read more about Rett Syndrome: http://en.wikipedia.org/wiki/Rett_syndrome
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