Tuesday, September 18, 2012

Mito Awareness Week


What can I say about this disease?

It is an invisible disease that robs the body’s ability to function properly.  It does NOT have to be a death sentence and those affected with it can live happy productive lives.  I know individuals that have mito that are playing baseball, have blackbelts, have college degrees, successful careers and wonderful families 

So you can see all of the tubes, medications, doctors and other things that are needed or you can see the smiles.  For us, if you ask us our mito story you are going to get a different story.  Our mito warrior died from the disease, however, not because he smiled a lot, made an impact and changed my life.  I learned more than I can ever express.  I care more about people now and I have a desire to make sure that NO one feels alone or isolated like I did and like I do even still at times. 

So what would I like you know about mito???

·        Mito is an invisible disease…. So you know that saying don’t judge a book by its cover.  Well that is what this means.  Some, well many of those with mito have very good days and look healthy.  This can change sec by sec though.  Their bodies are fighting to look good.

·        Mito affects many beyond just the person that has the diagnoses.  It affects the family, friends, coworkers and others.  It can touch every relationship in ways that you can’t even imagine.  It can bring people together but the not understanding can rip people apart as well.

·        The is no treatment and no cure for mito.  Many pray for a cure… for me I am praying for a treatment 1st.  I had a hard time knowing that there was nothing that I could do to help my son and that all the “treatments” that we did were just temporary fixes.  As a mom you just want to know that you are helping your child that you are taking care of them.  So for me I will be praying for a treatment and then I will be praying for a cure as well. 

·        Mito can affect anyone, any age, and at any time.  You can be an infant or a senior adult.  There are adults that don’t know that they have the disease until a grandchild gets diagnosed with it.  There are adults that seem to be healthy that get hit with an illness and all of a sudden can’t walk.  Then there are those that seemingly have it since birth always struggling to maintain weight and to do all the things their peers do.

·        I would like you to know that mitochondrial disease exists, you might not be able to see it but YES it is there.  I would like you to share information and to promote awareness!

This week is one week out of many people’s lives… please pray for them, pray for awareness, pray for treatment, pray for a cure! Share the information you learn, ask questions if you need to!

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