Saturday, September 24, 2011

Mito Warrior

Today is the final day of Mitochondrial Disease Awareness week. I am sad to see it end, but I know that myself and others directly involved and in the midst of this fight will continue to spread the word and help raise awareness throughout the entire year, not just this one week. The kids and I are taking the time to remember all the precious Mito angels we have lost (4 alone this week), and those that are still in the fight with us. All of these children, adults, their parents, loved ones and friends, are Mito Warriors to me. I would not be able to be as strong and as much of a warrior as I strive to be without the support and love from the other Mito families that we have met and become close with through this continual journey. So, thank you to all of you. It's wonderful to know that there are others routing for us and are there to text you and call you and help you through hospitalizations, medical procedures, awaiting test results, and the list goes on and on.

I found an new Mito blog today. I am really looking forward to sitting down and reading her journey. She has an etsy shop where she sells items she makes by hand and gives a portion of her profits towards Mito research and helping to find a cure. She is also having a giveaway from her etsy shop of items to help bring awareness to others. Her blog is called: Little Free Radical

Finally, a reminder in the form of a picture of why we continue to fight, raise awareness, and pray for a cure. So no kids have to be hospitalized for a simple stomach bug like Landon was in this photo. Absolutely heart breaking that these children (and adults) have to endure so much so early in their lives, and even at all.

This is when Landon was in the PICU at 10 months old b/c a simple gastric bug caused his blood sugar to drop from 84 to 48 (2 points about when seizures begin due to extremely low blood sugar) in a matter of a few short hours. The diaper (white bulge over his hand) is covering his D10 IV so he would not mess with it or try and pull it out. If we would not have known about his VLCADD, it is very likely that he would have slipped into a coma, had major seizures from low blood sugar, and even died. No one would have known to give him a D10 IV, or even to check his blood sugars. It would have been, "take him home and push fluids, it's just a gastric virus." The newborn screening is so important b/c without we would have never known. Please help us spread the word and raise awareness for kids (and adults) like Landon.

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