At 17 years old, our son Brett, experienced his first life-threatening tachycardia, which miraculously stopped on its own. This initial episode was the beginning of his battle with a terrible heart disease called Arrhythmogenic Right Ventricular Dysplasia (ARVD). ARVD is characterized by a progressive replacement of normal muscle in the right ventricle with fatty and fibrous tissue.

As the severity of the disease advances, symptoms range from palpitations and fainting, to sudden death caused by a fatal arrhythmia. Brett was a high school senior dedicated to being the best swimmer he could be when diagnosed with this ever-changing heart condition.

Since this discovery, quality of life for Brett has become a major factor as we searched for answers and treatments for his condition. In the beginning, frustration mounted as medication after medication proved to be ineffective in controlling Brett's continued bouts of tachycardia. Drugs were found to control the condition but could not be counted on during periods of exercise, and Brett's athletic career ended suddenly. His cardiologist, Dr. Seth Rials steadfastly encouraged Brett to pursue his life while we grappled with controlling his condition. Brett went on to complete four years at the College of William and Mary despite numerous hospitalizations. Eventually the arrhythmia proved dangerous enough to necessitate implanting an ICD (implanted cardiac defibrillator).

During college, Brett suffered through many "electrical storms" - episodes in which the heart goes into tachycardia, and the ICD delivers a shock to stop it, only to have it start up again. The ICD protects him from sudden death, while the battery of medications he takes daily, maintain and stabilize the electrical properties of his heart. Only a year ago research made it possible for Brett's cardiologist to successfully perform a catheter ablation to the troublesome area where he was having recurrent rhythms. ARVD is a degenerative heart disease and our prayers are that medical technology will advance faster than his condition deteriorates. As a family, we have often felt lonely and consumed with making the right decisions in our son's care. We know from research that ARVD is genetically linked which makes our 16-year old daughter, Shannon at risk as well.

As a means to protect her from a possible episode of tachycardia, Shannon is tested yearly with an ECG and a stress test. Brett is 25 and currently the assistant swim coach at Virginia Tech where he is studying for his Masters in Business Administration. While the condition of his heart is uncertain, he continues to live his life. Thanks to those at the CARE Foundation for their support, and the doctors, scientists and concerned citizens who are working hard to find new medications, procedures and genetic links that will stop the loss of life caused by these dangerouscardiac arrhythmias.