The Struggle

I never knew that crossing off bucket list items this stage in the game would be so hard.  This disease has sucked every ounce of energy I have to wake up in the morning.  It is beyond hard to have a positive outlook everyday you wake up and feel like death, but I am trying my best.  Restarting Full Sail has been one of my biggest accomplishments and I know that it is what I need to do, to ultimately be okay with dying at such a young age.  The last few weeks I have been bed ridden but all I can see is the finish line of graduation that is coming in April.  Today has been beyond rough, I pray tomorrow will be easier.

September 27, 2012

By viewing this photograph you may assume that since my blog title is September 27, 2012 that this would be the day the photograph was taken, it how ever was not.  This photograph was taken in April of 2012 when I was in a coma and my loved ones had no answers.

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.