My name is Julie Rios, and I am a teen living with mito. I am fourteen years old. My mito story started when I was very young, so I don’t recall much of it. However, my mom tells me that as a baby, I was hospitalized four times, received weekly lab draws, and decompensated any time I was ill. The doctors gave a couple of “possible diagnoses”, none of which were optimistic. Some of my oldest mito memories are of getting blood drawn, and my parents wrapping my arm in saran wrap with cream underneath to numb my arm.
Now, I have been diagnosed with ‘presumed mitochondrial disease’. However, I don’t normally see myself as a mito kid. Generally, I’m just a kid. My mito is simply something I deal with. When I am not dealing with migraines or fatigue from mito, you can usually find me spending time with my friends, reading a book, or playing Pokémon Go! In terms of my mito treatment, I take a few different medicines, as well as a vitamin cocktail that keeps my energy up, and allows me to do things that I want to do.
One thing that does make me feel very positive about my condition though, is Camp Korey. Camp Korey is camp for kids with life threatening illnesses. I have been attending camp for eight years now, and have made some lifelong friendships through it. On my first year, I met a very good friend of mine, Lillian. She lives in Louisiana, so being best friends can be a little tricky, but we make it work.
The guild has been in my life for as long as I can remember, and I have a very good memory. I’ve watched the guild grow for many years. Services have improved, research has been funded, and many families with kids with mito have found support in the guild. My whole family is very grateful that we are involved in the guild, as they have helped us and many other people in hopes that one day all kids like me can thrive despite mitochondrial disease.
Thank you for taking the time to read my mito story!