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When K was born, she was seemingly healthy.

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With the exception of a couple of ER visits during her infancy, frequent illnesses, and slowness to reach milestones…we thought things were okay for most of her first year.

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By her first birthday, it was clear that more was going on. She was a slumpy, floppy baby still…not standing or walking, needing to be propped up to sit, not eating, losing weight, dealing with chronic constipation, and so forth. So we switched pediatricians because ours was not paying attention to what was happening to her.

Switching pediatricians was one of the best decisions that we’ve ever made for K, but it led to a very different sort of life for all of us. The kind of life filled with strange tests…

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And hospital stays…

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And labs…

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And surgeries and procedures…

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And therapies…

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And weird new things…

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And innumerable hours of our lives spent in clinics and waiting rooms…

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(sometimes you just HAVE to be fabulous…even at the hospital.)

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And equipment…

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And yes, sometimes it has been exhausting…

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seriously exhausting, which leads me to the reason for writing this post…

This week is Mitochondrial Disease Awareness week. *Mito is the disease that has changed our little world forever. Life will never go back to “normal” for us. It is a progressive disease and there is no cure. K will be sick, for as long as she is here with us…which of course we hope is FOREVER. K is fairly stable right now, but there are no guarantees with mito, no guesses about how the disease will progress or the path it will take. Mito means the cells in her body do not produce enough energy to power her organs, so they don’t work the way they should…and working without the right amount of power will cause more damage as time goes on. While there is currently no cure, we attempt to raise awareness so that people will better understand the disease, contribute to the fight against it, and perhaps one day that cure will come, for K and for all of her little friends who struggle with the same exhausting disease.

But K has taught us that with the right attitude, you can pull just about anything off…

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And when you are looking for it, there is always WAY more good than bad to be found, like smiles and laughter…

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02 16 13_7679_filtered_edited-1(especially when throwing firecrackers into the lake with dad.)

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She’s also taught us that anything can BECOME normal, if you give it a chance…

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And that sometimes being brave means being “the most scared girl on the planet, but she did it anyway”…even if you cry the whole way.

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She taught us that sock monkeys can make just about anything better…

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And that friends who truly get you are one of the best things in life…if you find one, you better hang on tight!

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ch 4-22-06 Nathan's birthday 127And if you’re VERY lucky, some friends will turn into family…

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So yes, mitochondrial disease will be a part of K’s life forever, but our hope is that we will all be too busy LIVING LIFE to spend too much time worrying about it…for as long as that is possible. But it would be wonderful if any of you would help us spread the word about mito this week (or any time of the year!)…although it occurs at roughly the same incidence as cancer, it is MUCH less well known. So tell somebody about it. One person even! Share this post…just a couple clicks is all it takes. Go to the UMDF website and learn more. Get involved. Volunteer to be a counselor at Mito Camp or donate a little bit to help a camper be able to attend. Donate some new or gently used toys or movies to Children’s Memorial Hermann Hospital…or whatever your local children’s hospital is. Pray! Everyone can do a little something…and everyone doing a little something turns into a BIG something! Help us change things for the better, for K and for the kiddos like her everywhere.

* As of the date of this post, K still technically falls in the “highly suspected” category of mito. It is incredibly difficult to diagnose (and is made even more difficult by the lack of knowledge and information about it, even in the medical community) and while her doctors agree that this is what is affecting her, we are still awaiting science to catch up and provide us with a genetic diagnosis. 
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