Imagine your first day of high school. Excitement, new friends, places to go, things to do. For John,it started with unexplained and uncontrollable vomiting. John spent months seeking medical help throughout the country only to remain undiagnosed, exhausted and his health further deteriorated. This lead to IV therapy and two years of home tutoring.
Eventually,with medication and help from a team of doctors at Case Western, John’s life returned to normalcy for about 2 years.
Suddenly, at age 22, John could no longer trust his body. His heart rate reduced to 18 beats per minute and his blood pressure would plummet, rendering him unable to walk around the house without falling unconscious. John was diagnosed with third degree heart block and a pacemaker was implanted. While the pacemaker was lifesaving, John suffered next what appeared to be stroke like symptoms and seizures. These problems persisted and spread to the rest of his body. Issues with his kidneys, pancreas, and GI tract, crippled his ability to enjoy simple things.
The search for a cause began again. During this search, John had numerous emergency room visits and hospitalizations, had a port inserted, went on total parenteral nutrition, got a G-tube, missed holiday celebrations, dropped out of school and all other activities, and was ultimately confined to his bed. Finally, in the fall of 2012 the search ended when John was diagnosed with mitochondrial disease.
Although the diagnosis brought relief as his symptoms were now being properly treated, John had to face the fact he was living with an incurable and progressive disease. However, determined not to let mitochondrial disease dictate his life and concerned about others diagnosed, John decided to take action.
John established this research fund to support research projects focused on finding ways to help manage, treat, and ultimately cure mitochondrial disease.