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    Posted January 25, 2014 by
    tmcfarlin
    Location
    Sharpsburg, Georgia
    Assignment
    Assignment
    This iReport is part of an assignment:
    Living with a rare disease?

    Mitochondrial Encephalomyopathy

     
    My daughter is a beautiful 16 year old girl. She was healthy until 9 years old. Her symptoms started with seizures, then progressed to many other life altering symptoms. She began having extreme muscle weakness, to the point that she was unable to walk after exerting herself. It never took much to exert her....just a trip to the grocery store was too much. Once we were able to get the seizures under control, we began trying to obtain a diagnosis. After many specialists and many hospital stays, we opted for a muscle biopsy in a desperate attempt to help our daughter. A year and a half after her symptoms began, she was diagnosed with mitochondrial encephalomyopathy. There are so many different types of mito and ranges of severity. Once we got the diagnosis, we began treatment with many prescriptions and supplements. She is doing much better and is quite stable now. However, her life has changed drastically. She is now a special education student in main stream classes at a local public high school. Her brain MRI showed white matter loss, so with that and the large doses of seizure medications, she is a bit slower to learn than before the disease attacked. She loves to music and to dance! However, the muscle wasting is taking it's toll on her body. Her legs have several issues that make it painful and difficult for her to dance. Despite the pain, she continues to dance! She has blood pressure issues....her blood pressure can drop at any time causing extreme flushing and dizziness. I think the hardest part of the disease is that she is a "normal" looking girl that fights hard to be "normal", so teachers and administration do not understand how hard it is for her just to complete a normal day, much less any extracurricular activities. She often needs a nap after school from the fatigue of the day. While there are many children who are not as stable and controlled as Taylor, it still continues to be a struggle. We never know what is going to happen next or when it may strike. It is a silent disease that is wearing out her body faster than any teenager should have to endure. Another factor with mito, is that most physicians and specialists know very little about the disease, so getting proper treatment is a struggle for all mito parents.

    Thank you for taking the time to read Taylor's story.

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