Tuesday, September 17, 2013

A VERY Special Week

Hey guys! I know it's been a while since I last posted, so I decided to come back on tonight... And this post is ESPECIALLY special!!! You see, this week is Mitochondrial Myopathy Awareness Week...

I think most of you on my blog know what Mitochondrial Myopathy is  -- but just in case, let me explain! Mitochondrial Myopathy (aka Mito) is a genetic disorder that keeps your mitochondria in your cells from working properly. The mitochondria, sometimes called the "powerhouses" of your cells, are in charge of creating ATP, which is basically energy. When they stop working, you just don't get as much energy as your body needs.

Mito isn't super common... but not super rare, either. While the odds of you ever being diagnosed with Mitochondrial Myopathy are only about 4000 to 1, there are almost 10 friends that I can think of that have Mito. So, the odds of you (or someone in your family) being diagnosed aren't impossible, even if they aren't probable.

It's nice to think you probably won't ever be diagnosed with Mito.... but once you enter that world, it's impossible to leave. When you know for certain that you are a person who has Mito in them, everything changes. Everything you do, or say; anyone you meet -- it will never be the same. Ever. And when you think about it... do you have Mito, or is it the Mito that has you? It can be so hard to tell sometimes. It's like, your life doesn't belong to you anymore. You aren't who you used to be. And there's no going back.

The bad news? Well, there's no cure! So far, no one has been able to come up with a treatment that permanently gets rid of Mito. The good news? Every year, we raise more money, and tell more people -- and we know that it is all going towards finding a cure. After all, anything is possible! So my mom, and my dad, and my sister, and my brother, and all of my 13+ cousins, and my aunts, and my uncles, and grandparents..... We all go and find someone we know (sometimes, even someone we don't know!) and tell them about Mitochondrial Myopathy. More people are becoming aware, and meanwhile there are still scientists and doctors working together, to try to help me, help you, help us... By finding a cure.

P.S. Tomorrow, I'm doing a whole presentation on Mito for my Social Studies class. Everyone in class has to come up with something on the news, or something they think is news-worthy, and present it to the whole class. And the topic I picked was Mitochondrial Myopathy Awareness Week! VERY nervous. Feel free to open the attachment and read through my presentation, and tell me what you think! :) Well, if I can get the thing to attach, anyways!!!


  1. Sorry, guys... I couldn't get the file to attach. :( I'll try again tomorrow... but if it won't go, I'll just post it on FaceBook. Have no fear -- you WILL see my presentation! :D

  2. Awesome, Mattie.
    Looking forward to seeing your Social Presentation Studies. Soooo MUCH better to have something "right in front of folks" rather than something in the news that's far away. And YOU are right there in front of your friends! Love your willingness to share your journey, with your peers and with the world. As always, you ROCK!

    Ms Lu