(aka) Ataxia Telangiectasia Children's Project Inc.
6810 N. State Road 7
Coconut Creek, FL 33073
When my three-year-old granddaughter Madison was born, she was healthy and all seemed to be well. But, by the time she was one, she struggled to overcome a rotavirus and pneumonia. And, when she walked, she was very unsteady. As a grandmother, I saw that something was clearly wrong. As a nurse, I knew it was serious.
A-T can be difficult to diagnose, and after four months, all we learned was that her disease would be 'chronic, genetic and fatal.' I plugged those words into an internet search and found ataxia-telangiectasia (A-T). Even though I had never heard of this disorder, I recognized Madi in every symptom. A specialized blood test confirmed our worst suspicions.
There is no cure for A-T and no medicine or treatments to fix it. Many kids die by their teen years. They are susceptible to leukemia and lymphoma as well as aspiration pneumonia, feeding and swallowing problems, and all the troubles that go with decreased immunity and mobility. On top of being completely devastated and scared, we had no idea where to turn.
Our doctor referred us to the A-T Children's Project and told us that there was only ONE specialty center for A-T in the U.S. - the A-T Clinical Center at Johns Hopkins Hospital that was established and is funded by the A-T Children's Project. With your help, a cure will likely come from their work and the rest of the research of the A-T Children's Project. This is our greatest hope for Madi.