Leslie's Story ~

 

Leslie was always sicker than her sister when she was younger. Viruses would last longer with Leslie. Growing up Leslie always had many symptoms and problems that never led us anywhere. She always had stomach problems that no one could figure out what was wrong. They could never put together the pieces of the puzzle. Her Mito affected her GI system, lungs, autonomic system, neurologic system, eyes, and muscles.

Leslie had been to Cincinnati Children's Hospital when she began having multiple problems where she was told that it was all in her head and that she was making herself sick. She had been to Atlanta, Tufts at Boston and University Hospital of Cincinnati. We took her to Cleveland Clinic in 2007 where she was eventually diagnosed with Mitochondrial Disease at the age of 19 and unfortunately passed away at the age of 24 in October 2012.

She had numerous surgeries and hospitalizations. She had a triple lumen central line where she received her nutrition and all her medicines. She had a g-tube for venting and a j-tube for feeding until her stomach totally shut down. She had a foley catheter placed and was on oxygen 24/7. She was on about 30 medications daily.

Leslie loved listening to music, writing poetry and loved life. She was so full of life. She had dreams of becoming a doctor. She was extremely smart and graduated high school as Valedictorian and went on to Case Western University in Cleveland for 1 1/2 years before she got too sick to attend. She loved being married to the love of her life (Jeff) and was married for 16 months before she passed away.

She loved owls, polka dots, the color pink and she loved her service dog Billy.

Leslie knew her time was coming to an end and knew there was no cure for her but, she told me to keep fighting and doing all that I can do to find a cure for this horrible disease. I made her a promise that I would do all that I could do to help other people with Mitochondrial Disease.