Twelve years ago, when I was eight, I was diagnosed with a form of Muscular Dystrophy called Mitochondrial Myopathy (Mito for short). It's a degenerative, hereditary, neuromuscular disease that affects the metabolism in terms of energy. In short, I can't get through the day without the help of my wheelchair or taking naps.
Growing up I thought I was the typical kid, going to school, learning to read and so on. According to my mom, I wasn't. At ten months old I stopped eating and drinking do to lack of muscle. I also had developmental delays with walking, talking and later on with things like reading, which led to the diagnosis of autism. The doctors couldn't have been more wrong, by the way. When I was seven I remember walking to the car with my mom after school and she asked me if I was okay. Many years later I found out it was because of my gait. That was the beginning of my lifelong progression of Mito.
My transition into this life was a particularly hard one because my elementary school decided not to believe that I had any disease whatsoever and refused to change my school hours from 6+ to two and a half, despite my doctor's letters. My mom's friends shunned her because of the rumors that she was poisoning her daughter. These days I call this a blessing in disguise because we were able to whittle out our true friends and I was transferred to a new school which resulted in a snowball effect of good fortune.
(My tattoo on my right forearm)
My parents raised me to be positive and to make the most of life and because of that I have had the opportunity to be the regional ambassador of the Muscular Dystrophy Association, I have been on the Jerry Lewis Labor Day MDA telethon (I know, it's a mouthful) not once but twice,I have had my art featured at the Laguna Beach Art Festival as well as auctioned off at the Afghan Women's Writing Project and I have won the Stacey Middle School talent show to name just a few.
(My drawing of Malala for the AWWP fundraiser)
In this blog I will share my struggles and triumphs and what it's like to live with this disease. I hope you find encouragement and get inspired to live life to the fullest