Monday, September 19, 2011

Mito Week!!

Hi, everybody! I'm not sure if you know this, but this week is Mitochondrial Myopathy Awareness Week. Some of you might not know what Mito is, so I'll tell you. Mitochondrial Myopathy is a disease that makes your Mitochondria stop working. Mitochondria are organelles in your cells that give you energy. When they stop working, you get tired and don't feel well because you don't have all the energy your body needs. If you have Mitochondrial Myopathy, you are very likely to develop speech and  hearing issues. You can also get Disautonomia, which is when your body cannot regulate your temperature and you can get very hot or cold.

With Mito, you need a lot of different medical equipment. I have a wheelchair, leg braces, orthotics for my ankle, my BAHA (Bone Anchored Hearing Aid), and a feeding tube. With or without Mito, you might need a feeding tube, a wheelchair, a BAHA. But most of the time, it's with Mito that you need all of them.

Sometimes when my Mito gets really bad, I get upset. I feel bad not just physically, but emotionally too. I get mad, sad, and sometimes I scream and cry. Most people have something different about themselves that they don't like, but a lot of people don't know what it feels like to have someone staring at you because you have a wheelchair or a feeding tube. So many times people ask me, "Why are you in a wheelchair? Did you break your leg or something?" and when I reply that I have Mito and I was too tired to walk, they stare and don't look away until I go somewhere else. Most people don't know what it feels like to have people ask, "What's wrong with your leg, why are you in a wheelchair? What's wrong with your neck? Why do you have those things in your shoes?" I feel that some people have all the luck, and I have none. I get SUPER mad, and I want to yell at God, and ask him why he gave this to me. I will never know, but I'm always hoping that one morning I will wake up, and I'll know why he gave me all this. That would make life so much easier.

Mitochondrial Myopathy isn't like a regular disease. It's for life, and you can't make it go away, no matter how hard you try. Mitochondrial Myopathy isn't an easy disease to live with. So let's spread awareness for Mito, because most people don't even know it exists. Every year, go on the Walk For Mitochondrial Myopathy. Donate money to the United Mitochondrial Disease Foundation (UMDF) People think leukemia and other cancers and diseases need to have more people know about about it, that those diseases are worthy enough for people to know about them. Well, if you have Mito or know someone who has it, you will probably agree with me when I say Mitochondrial Myopathy needs to have more people to know about it. Together, spreading awareness, we can help find a cure.