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.

17 comments:

  1. Great job Mattie, such words of wisdom! Together we can help find a cure!
    Heather & Annabella

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  2. Mattie, I understand the frustration...Why me?
    I do not have the answers to that question, but I can you that you and your family are Ambassadors for everything you have had to endure. Because of you, more people are learning of the disease and all the "side effects" that go along. I do Pray that you can have MANY more days with energy and little pain..and Many more Walks and Blogs to send out the message! Love to All Ya'll !!! :)

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  3. That was really well done Mattie! You are a great spokesperson to bring awareness to the Mito community. I think you are awesome!
    Ms. Starla

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  4. Mattie you are a beautiful, smart and courageous girl. I love your post and your honesty. I didn't know anything about Mito until I met you & your family. You all are such an inspiration.

    Much love!

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  5. Mattie you are a super smart girl and such a great writer! I have learned so much since meeting you and am so glad that you have shared what it is like to have mito. Most people just don't have any idea what it is like to have a disease. You have given us an idea of what you have to go through. I think you are very brave! We love you & your family :-)
    Michelle

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  6. Mattie, you are one of the strongest people I know of. You inspire those around you and even those who just know about you.

    Thanks for your post, you gave me some perspective for the day.

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  7. Mattie, my family and I are Blessed to be in the same Church with you. Your courage inspire many people to be grateful for life no matter the circumstances, and God knows that. Thank you. Joelma (BTW, I'm Rodrigo's mom; he in in Revolution, perhaps you've met him.)

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  8. awww isnt this the truth!!!be strong Mattie!we love you and yes we knoe what its like!!we go through it everyday as well:(
    Amanda and Layton

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  9. Thanks for posting this Mattie. I learned a lot. You Rock!

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  10. Mattie, I think you are so brave to share so much of your feelings in this blog. I have a daughter who is newly diagnosed with Mito. You sharing your feelings helps me understand how she might feel. I think that God doesn't give us Mito. I think he gives us the strong spirit and courage to live a great life, in spite of Mito. Clearly you are making the most of every day and making a difference. Thank you for helping others by sharing your story and spreading the word about Mito. Please keep writing. And keep on finding the good in every day. You are a very brave girl!!!!!! Allison

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  11. WOW – Such wisdom from someone so small.
    Sometimes others see the hand of God where we see nothing. I can’t claim that I know why God gave you this disease, but as I read your article, it occurred to me that this disease needed a voice and God could not have given it a more beautiful and sincere voice than yours.

    Just know you are always in my prayers!

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  12. Mattie,
    Thanks educationg us about Mito. I had no idea what it really was! I can understand being frustrated about something that is out of your control! Keep fighting and praying. We'll keep praying and will tell everyone we know to read your blog so they can understand too. Out there somewhere is the special person that God has chosen to help find a cure for Mito!
    Katie & Tony Gonzalez

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  13. Mattie, I think you are an amazing person and student! You have inspired me and I am so lucky to have met you (last year) and to teach you this year! Thank you for sharing your blog with me! Continue to educate people about Mito and I know you will make a difference in other people's lives! Ashley Price

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  14. Mattie-
    You are beautiful girl inside and out!!! You put your words together great to explain more about Mito and how YOU feel!!! I have not seen you since I worked with you in preschool @ Sugar Hill Baptist. You have grown into such a special young girl- I would love to see you and catch up!!! I miss your smiling face on the playground!!!! Jennifer Davidson

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  15. Mattie,
    As many people here have posted, your beauty explodes....your personality and charm touch so many! I want to tell you how wonderful and inspiring it is for you to share your heart and bear your feelings here for us to read. That is not easy for some adults and here you admit that some days things are hard. Honey, I know there are days when it is hard and I just want you to know that there are so [SOOO] many people who love you and on those days, make sure you tell us you need some extra prayers so we can be along side of you in spirit to help you. I pray for a cure and until that day, we will continue to pray for your strength. We love you mucho!!! Can't wait to see you again!

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  16. Mattie, thank you for sharing what it's like living with mitochondrial disease from your perspective. My son has VLCADD, which is a fatty-acid oxidation disorder, another type of mitochondrial disease. He is not old enough yet (18mo) to share his story but I hope when he is older he has the strength and courage to share his story like you. You are doing a great job getting the word out about Mitochondrial Disorders!

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  17. Mattie I am so impressed by the sincerity and honesty with which you write. I don't think you realize what a special young lady you are and it's one of the things that I absolutely love about you. You truly inspire me! Keep using the gifts God gave you because you make the lives of others better around you when you do! Love, Miss Sarah

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