Let me tell you our story:

Savanna was born a normal child on October 25th, 1994. She was a beautiful baby girl from the start. When Savanna was around 1 ½ years old, we began to notice that she was more wobbly than other children her age. She also slobbered frequently. We asked the doctor, and he decided to send us to a specialist. After several appointments to different specialists, finally a neurologist gave us a diagnosis of a mild case of cerebral palsy. That was in 1997 when Savanna was 2 years old. We started physical therapy but were not convinced that's what Savanna had.

On the Thursday before Labor Day in 1997, I just happened to be out sick from work. It was unusual for me to watch TV, but I was down and out with a stomach virus. A special came on Turning Point with Barbara Walters. It was no accident that I saw that show. It was about the A-T Children's Project in Florida and how the founders had funded a scientist in Israel who had isolated the gene that caused a rare genetic disease called ataxia-telangiectasia.

The founders, Brad and Vicki Margus, have 2 sons with this terrible disease. Their boys were on the program that night, and they reminded me so much of my daughter Savanna. Their facial expressions and the wobbliness in their walk were just like Savanna's. They described the disease and how rare it is. They explained how bad the disease was, and I thought there was no way Savanna could have this, although it looked very familiar. They gave the 800 number for the A-T Children's Project at the end of the show, and we called the next day to request more information. When the information pack came, I sat down to read it, and what I found changed our lives forever.

I learned about another symptom of A-T that I didn't know about which Savanna had. Her eyes had been bloodshot in each corner for about 6 months. I had asked the doctor about it, and he said that it was nothing. It turned out to be everything. As I was reading the info, it said that one of the hallmarks of the disease is tiny red spider web like veins which appear in the corners of the eyes and on the surface of the ears and cheeks. I just lost it. I knew that my little angel had this terrible disease.

The information provided the name of the blood test that needed to be done for a diagnosis. We took her to the doctor, and he performed the test and called us with the results. I tried to prepare because I knew in my heart that she had this disease. Unfortunately, it was true. We were thankful to find out what was wrong but were devastated with the prognosis.

A-T is presently incurable and unrelenting. If the kids are lucky enough not to develop cancer, most A-T children are in wheelchairs by the age of ten and rarely live past their teens. It destroys their ability to control their muscles, destroys their immune system and gives them a very high risk of cancer.

Savanna is now 9 years old and a happy little girl. She attends school in a special ed classroom with an aide. She just got a new hot pink electric wheelchair which she is very proud of.

About a year ago, she started asking what was wrong with her head and hands and why they shake. One day when I picked her up from school, she asked me why we were going to the doctor. I told her that he was going to try and help her shaking and falling down. I told her that this mean old thing called A-T was causing her to do that. I asked her if she remembered some other children that we met who were in wheelchairs, and I told her that they have the same thing. She said that she just wanted a new hand. It was all I could do not to just break down. I didn't know what to say, so I just said that God only gives those hands to special people that he knows can handle them. I told her that she was my special girl and not to worry. She has not asked anymore, and sometimes when she has trouble, I just say that it's that stinking old A-T.

Thanks for taking the time to read about my little angel. Please click on any of the links for more information. AND, I'd like you to mark your calendars on Feb. 25th for our third annual DMXS Charity Ride for A-T. Call me at 678-300-7773 for more information on this motocross event.

Send Heath message: Ride4at@aol.com

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