Sunday, September 18, 2011

Why we desperately need mitochondrial awareness!

Heather and all 5 children are suffering from mitochondrial disease. Several of us have had strokes, several of us need wheelchairs or other devices to walk, 3 of my children do not sweat or shiver (Can you imagine never knowing if you where too hot until you had a heat stroke, or too cold until you saw the frostbite?) Heather has lost the ability to swallow solid foods and digest properly. The list goes on and on because mitochondrial are in almost every cell in the body!

We started Mito Families! in the hopes of reaching out to other families and help them through this very rough journey. It took us 7 years to be positively diagnosed with mitochondrial disease. Years of having to drive around the country to see specialists. There were always questions... why is one child more sick than another, why can't the doctor's just fix this, why can't the doctor's just tell you what is the matter. At times we were terribly lonely, sick, and full of questions ourselves.

We could never walk away from the search. The kids and later I (Heather) continued to worsen. We learned to trust our medical team. We began educating our relatives, friends, church, anyone that would listen in mitochondrial disease. Through education of this disease our lives and the lives of those that will deal with this someday will be better.

Another HUGE reason for mitochondrial awareness and education.... There is NO direct treatment. Only this year has 1 possible medication been put into clinical trial. There is NO cure. There is no office at the National Health Institute or elsewhere that compiles all the research and creates studies and medicinal trials for the mitochondrial community. We MUST have cooperation. 

Please whether you are directly affected or not help us spread awareness of this devastating disease.

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