Monday, September 20, 2010

Mitochondrial Disease Awareness Week

This is it.  Time to raise awareness and call attention to a disease that affects and estimated 1 in 3000 people.  A disease that no-one knows about, a disease that steals, a disease that kills.  Marie lived with Leigh's Disease (one of the many recognized forms of mitochondrial disease) for nearly 2 1/2 years before God called her home.

Leigh's Disease stole from her the ability to express herself, to move on her own, to hold her head up.  Marie never had the chance to speak a first word or to take a first step.  This disease left her in a body that was broken, a beautiful little soul trapped in a cage. She had a terminal disease and though her spirit shone and her smile was the most breathtaking thing I will see this side of Heaven we watched her regress and loose things.  We didn't have very long with her and though we were blessed by the time we did have there is just so much we missed.  So much that mito stole.

Please join me in raising awareness so that someday there will be better treatments, maybe even a cure.  So that someday I will be able to tell Marie's story without having to explain the disease she suffered from.  It is so hard to have lost a child to a disease no one knows anything about.

Please join me in spreading the word! For more information please visit the Mitochondrial Disease Action Committee, MitoAction.



clarissa said...


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