September 27, 2012 after several months of hospitalization and inpatient rehab, I had a genetic specialist appointment at Riley's Hospital for Children and it was that day that I was diagnosed with an extremely rare child hood terminal illness called mitochondrial disease. My specific form is called Cytochrome c oxidase deficiency.
It has been a couple years since my diagnoses and I am now on hospice but I do not live much different then prior to my diagnoses. I do cross a few more "bucket list" items off my list at a quicker rate, but my goal in life as it has always been is to change other's peoples lives through music.
