Mitochondrial Disease Awareness Week

This past week was Mitochondrial Disease Awareness Week September 18 - 24. Mitochondrial Disease (Mito for short) is a group of disorders that affect the Mitochondria (Energy Cells) of our body. People with Mito,  are not able to convert food they eat, into viable energy and oxygen their bodies need. The disease is accompanied by a myriad of symptoms that literally do not fit a common mold. Numerous body systems are effected causing different levels of severity in those body systems. The facts of Mito are often grim and difficult to understand. Facts and Stats say:

Every 30 minutes a child is born that will develop Mitochondrial Disease by the time they are 10. Nearly 1,000 - 4,000 children are born a year with Mitochondrial Disease. 80% of children diagnosed with Mito by the age of 5 will not live to see the age of 20. Mitochondrial Disease is as common as all childhood cancers combined and just as deadly.

These are statistics that I can not escape. The thoughts of the last two sentences from the line above haunt me; 80% of children diagnosed with Mito by the age of 5 will not live to see the age of 20, Mito is as common as all childhood cancers combined and just as deadly.

I waxed and wained this week about writing about Mito Awareness and Vivien, because we are not certain this is in fact what she has, but it is a definite possibility and one that has given us a clinical diagnosis thus far. I try to think maybe all of Vivien's symptoms are just a fluke and with time, like many doctors have said, she will "out grow all of her symptoms." She is doing so well now compared to where she has been. However, there is an affirmation that resonates and lingers with me still; Vivien is and never has been like many other children her age. Her fight for life began early and she has fought very hard. As I type this, she is again sick with strep throat and an ear infection, not sleeping well at night and screaming out as if in pain a few times a day. She's restless, cranky & on edge, running around and smiling one minute and crawling in my lap the next.

Two weeks ago we walked into a doctors office to hear words like; uncertain, stable, & progressive. Difficult words to hear, even more difficult to comprehend. Although, as of right now, we are not certain of this diagnosis, I feel the tests will reveal what I have for so long thought was going on with our sweet Vivi Mae.

We stand on the fence. On that fine line of yes or no, certain & uncertain, progressive & stable, confirmed or unconfirmed. We will soon walk over that gray line to find a more black & white picture. Tests will give us answers that will give us more confirmation & more uncertainty.

Reading other blogs by Mother's that live Mito day-to-day with their children, has given me a better sense of how this horrible disease affects the lives of many families, families like; Jack's, Nathan's, Hudson's & Gavin's. More times than often, I feel as if I am reading my own words and experiences. Many families living our day to day and often times under far worse circumstances. For this reason, I knew I needed to write about bringing awareness to Mitochondrial Disease.

Less than 1% of Health Research Funds go towards the research for Mitochondrial Disease. Such a sad and stark reality. Raise awareness, Raise support, Raise your voices to let the adults, children, and families effected by this horrible disease be heard.

I firmly believe, stand for what is right, even if you are standing alone. Alone is where many of these families, ours included feel they are. But, with our support and advocacy, that small voice will rise to the surface causing a rippling effect that will carry on those voices, so that in hope more research can find better treatments and possibly a cure. Visit United Mitochondrial Disease Foundation or MitoAction to learn about ways to give.