Amanda Butler

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My name is Amanda. I have mito, along with my 2 beautiful children, ages 25 and 22. My life is consumed with doctor appointments and hospitalizations, but that will never stop me from advocating and fighting for others. It’s been a very long road for us because we have had to move multiple times to be near our specialist (Amy Goldstein). Despite all the challenges, I always pull through them. I am always there for anyone who needs to talk and willing to share my experiences with others. My one goal in life is to be a motivational speaker for mitochondrial disease. A lot of doctors, during my prior hospitalizations, would tell me to give up and go home and that I was end of life, but I have refused to believe that. I suffer from major GI issues (TPN dependent, intestinal failure, feeding tube, ileostomy bag). I have neurological and respiratory issues as well, along with bleeding and clotting disorders. I have mitochondrial encephalomyopathy and I was recently diagnosed with adult onset Leigh’s Disease. These problems have caused stroke-like episodes and seizures. It is really hard on me because my husband is left taking care of me and the kids, on top of working a full-time job. Recently, I have been thought to have COVID because of findings on x-ray along with severe pneumonia and it has taken a huge toll on my body, however, I will not let it bring me down. Regardless, of the challenges that I face, I still have a positive outlook on life and go out and have fun. I have decided that I want to advocate because I know that the majority of people, do not like to do so. So, I will fight no matter how hard life might bring my family and I down. My motto is “I live by faith and believe that If God brings me to it, He will pull me through it.”