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PREFACE: Steven James Yray-Wasilik passed away on June 9, 2003 from the disease process chronicled on this website. He had celebrated his fifth birthday in March.

INTRODUCTION: Welcome to friends, relatives and visitors who have linked in from various mitochondrial related sites. These pages are a history Steven James' journey as told from his father's point of view (me). The page was originally designed to keep far-flung friends and relatives up-to-date and, more recently, has also become a place to share my experiences, feelings, frustrations and fears with the many other parents, siblings and individuals who have learned about mitochondria the "hard way." Please note the journal reads in reverse, i.e., the most recent entries are at the top of the page. As the length of the journal has grown, I have broken it into sections, and archives may be accessed through links at the top of this page. If you wish to read of our journey chronologically from the beginning, access the earliest archive section first.

QUICK HISTORY: After a difficult pregnancy and C-section delivery, it seemed we had a healthy baby boy. However, as early as one month of age, Steven had seizures that failed to respond to treatment or fit into a diagnostic category. The seizures didn't respond well to treatment, and often required trips to the emergency room. After a diligent neurologist finally captured a seizure via EEG (they were notoriously absent whenever Steve was "hooked up"), we learned that they were myoclonic in type. This finding, combined with speech and motor skill delays, pointed potentially to mitochondria. Many extended hospitalizations and several muscle biopsies later, we have a "consensus" diagnosis of an undefined mitochondrial ("mito") disease. Unfortunately, current genetic technology was unable to place Steven's situation into any of the known mitochondrial disorders. As such, we had no firm prognosis. Like all mitochondrial illnesses at the time of this writing, we also had no cure for the disease or effective treatment options simply for many of his symptoms. Steven's issues progressed and become increasingly complex during his life. Steven's evolving condition, his passing and the aftermath are described in the narratives, "Dad's Journal.". For a medical summary of his condition, click here.

Medical terms and resources: -Select- Mitochondrial Disease Gastronomy Fundoplication BiPap Intubation United Mitochondrial Foundation

For more medical information on mitochondria, please visit The United Mitochondrial Disease foundation.

Stan Wasilik

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