RSAngel

Hello, My name is Kimberly Ann.

My mother and I have made this web page to help inform our family and friends about the syndrome that I have.

Mom and I traveled to see Dr. Percy in Birmingham, Alabama and I was diagnosed with Rett Syndrome at the Childrens Hospital.

(These exerts are taken from The Rett Syndrome Handbook)

Rett Syndrome is a unique developmental disorder which begins in early infancy, seen almost always in girls. It is found in a variety of racial and ethnic groups throughout the world.

The age when RS begins and the severity of different symtoms may vary. The child with RS is usually born healthy and shows an early period of apparently normal or near normal development until 6-18 months of life, when there is a slowing down or stagnation of skills. A period of regression then follows when she loses communication skills and purposeful use of her hands. Soon, stereotyped hand movements, gait disturbances, and slowing of the normal rate of head growth become apparent. Other problems may include seizures and disorganized breathing patterns which occur when she is awake. There may be a period of isolation or withdrawal when she is irritable and cries inconsolably. Over time, motor problems may incease, while other symptoms may decrease or improve.

You can learn more about Rett Syndrome by clicking in the IRSA link.
I will be adding more to this page as I go along.
This is my first real page and working with it takes a little getting used to.
I have enjoyed it this far and I hope that you like it too.

The road to Kimberly's diagnosis was a long one. It was very hard to get her first physician to finally order any tests for Kim. He referred to me as a "Refrigerator Mom" and that she was just a little slower than our first daughter. I was brought up to respect doctors so I listened to this doctor for almost 3 years. We were finally referred to a neurologist in our area who confirmed that Kim had a learning disorder and who did tests to rule out deafness and seizures.

After that, I contacted our local school system to get help for Kim. They were able to set up an evaluation for her. That month, Kim was able to start school at Vivian B. Adams. Adams is a special school for kids that serves several counties in our area. Later on that year, Kim was seen by another evaluation team from Birmingham. They diagnosed Kimberly with autism and suggested that she be placed in a kindergarten class with her peers so that she could interact with them and have them as roll models for her speech patterns. This worked for the first 2 years in school but the long periods off during the summer was causing problems. By the 3rd grade, Kimberly was not responding to most of her friends anymore. All she wanted to do was sleep. Everything that we and the school tried was getting us nowhere with her. We placed Kim's name on the waiting list for Adams School so that she would be able to have year round school again. By the fall of the year, we got the good news that Kim was going to able to be placed in a class there.

Kimberly was very happy to be back in the school where she first started at the age of 3. It was like a "home coming" for her. Where it used to take anywhere from 1-2 months to get back in her schedule at school after a summer break, It took only 3 days. She is making progress again. I think the smaller class size has made her more comfortable with her surroundings. She can concentrate better on her work for the day.