AB: Why don t you start off by telling us a little bit about yourself. How old you are.

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1 Nobody knows my own body better than me. You kind of have to, otherwise you re not going to do too well if you don t know your own limits you just have to really work hard and be smart with mito, because it s tough. But you ve got to live with it. Andrew Mele is a teenage athlete who shares his experiences living with mito, learning his limits, and goals for the future. Annie Balcells: Hi this is Annie. I m a member of MitoAction, and I m here with Andrew. He is a teenager living with mitochondrial disease and he is here to tell us what his day-to-day experience is, some advice for other teens and what you ve learned through this journey. So first of all, hi Andrew. How are you? Andrew Mele: I m good. AB: Why don t you start off by telling us a little bit about yourself. How old you are. AM: I m Andrew Mele, I m 15, I m a sophomore in high school. I attend Country Day School and I live in Norfolk, Massachusetts. AB: Are you attending school for a regular school day? AM: I actually am attending school pretty much on a regular basis a regular school day. AB: How is that for you? Do you find that hard? AM: The day is long, but I get through it. I can do it. It is hard, but I manage. AB: Okay, and what else do you like to do in your spare time? AM: I like to play a lot of sports. Right now I m in hockey season. I play football and baseball at the varsity level, and I enjoy it. It helps me a lot. AB: Wow! Now I know a lot of people with mitochondrial disease have fatigue issues, do you find that a problem? Sounds like you are able to do some pretty physical things. AM: I mean, It does put me at a disadvantage in athletics, but I just try and I work really hard. It pays off. I do get sick a lot, but I m doing fine. It is a disadvantage, but you learn to live with it. AB: Do you find that you have to rest a little bit more in between when other people may not have to? AM: Yeah, I have to pull myself out a few times, but just from experience you get know you your own limits, your own boundaries. You know when you re getting sick or you ve just done too much.

2 AB: Sounds like you re able to manage pretty well if you re playing varsity. AM: Yeah, I do manage myself pretty well. I ve been playing sports for a while. AB: So how does mito affect you? Are there any other symptoms that you have? AM: I get tired a lot, and I get sick a lot. I miss some school days, and I have to catch up on school days a lot, but I manage. AB: When you get sick, describe what that s like. AM: Nothing really works right. I m tired, I can t really think all that well. It kind of does a number on me. AB: What do you do, just rest a lot? AM: What I like to do is rest a lot. I like to take more vitamins and eat healthy, drink healthy, that kind of stuff helps you get back faster. AB: That s good. So you practice healthy behaviors that are good for everybody. Sounds like they work for you. So when you miss school, how do your teachers react to that? AM: They know that I have mito, and they take it easy on me. They are pretty good about helping me catch up and everything. It hasn t really been a problem at all. I work really hard so I can keep up with my work and maintain good grades. AB: Okay, so all your teachers are pretty understanding then? Did you have to explain to them what mito is? AM: Yeah, a little bit, but they mostly got it. They are pretty respectful. AB: That s good. Did you ever think about being homeschooled? Was that ever an issue? AM: I mean, I m sure that came up, but it was really never I never thought I had to do that, because I ve been doing quite well. So I never thought that I had to be homeschooled because of mito. AB: That s good. What about friends? Do all of your friends know that you have mito, or do you only tell some of your close friends? AM: I mean, some of them do, but not a lot of them. Some of them don t know because I live a pretty much regular life and I try to maintain that. AB: So you only tell them if you needed to for some reason?

3 AM: Exactly. AB: Is it ever hard to explain to people that, maybe you re at a disadvantage like you said or that it might be harder for you if they can t tell that from looking at you? AM: Yeah, it is pretty hard to try to tell and explain to people sometimes, because a lot of people might not believe me because I m doing so well right now. It is a little bit hard. AB: Do you have a good explanation of what mito is? I know it s complicated and sometimes it s hard to explain to someone who has no idea. AM: Yeah, it is pretty hard to explain. AB: Especially because it s so different for everyone. AM: Yeah, not a lot of people have heard of it either. AB: Yeah, I ve heard some people use a battery analogy. That your battery is just running low a lot, or something like. AM: Yeah, that s true. That s a pretty good one. AB: Sounds like the people you talk to have understood. They grasp it. AM: They respect it, they really do. AB: That s good. So can you go back a little bit, and tell me about what the diagnosis process was like? Do you remember that? AM: Not really because I was diagnosed when I was really young. When I was 2ish, around then, so I can t really remember, but I know it was real tough and my mom had to go to a lot of different doctors. They kept misdiagnosing me. I had to go through so many doctors and so many different people. AB: Right, so I guess that was harder then, but now that you have the diagnosis you are kind of able to take more control. AM: Yeah, it s being more left up to me, because nobody knows my own body better than me. You kind of have to, otherwise you re not going to do too well if you don t know your own limits. AB: Do you find yourself going independently to doctors appointments and things like that? AM: Yeah. My doctors pretty much leave a lot of stuff up to me because I ve been doing so well. They ll say, If you feel that that s right and that kind of stuff. There are going to believe me and say, hey, you know yourself better than we do.

4 AB: Right. That s good to hear, especially for someone who is a little bit younger than you that is just getting into the transition of being able to recognize those signs. What do you plan on doing after graduation? I know it s a few years away, but do you have idea? AM: I m hoping that after I graduate high school to maybe play college football. That would be really nice, I m working towards it. AB: Wow! That s a big goal, that s great. AM: Yeah, I m hoping. AB: You ll have to do another interview after you become a famous player. So if were going to tell a teenager who was newly diagnosed some advice, something that you ve learned, what would you tell that person? AM: I d tell them, you have mito, you re not the same as everyone else. You can t do everything that everyone else does. You have to know your own limits, know yourself, and know your own body. You just have got to be responsible. AB: And listen to your instincts about what feels right? AM: Exactly. AB: That can be a challenge for everyone. AM: Yeah AB: So there is anything that has gotten easier for you, as you ve gotten older? AM: Well, you learn from your mistakes. About pushing yourself, and stuff like that. It s just experience about life. AB: Did you ever have a time when you were pushing yourself too hard? AM: Yeah, I definitely have. Being an athlete, you try to push like everyone else, and sometimes you just can t do it. AB: So I guess those consequences are just natural, if you push yourself, you learn from that. AM: Exactly. AB: Well, that s great. Is there anything else you d like to say to teenagers, or maybe the parents of teenagers with mito. AM: Basically, you just have to really work hard and be smart with mito, because it s tough. But you ve got to live with it. You just have to work hard and be smart.

5 AB: Work hard, be smart, know your body. It sounds like you ve learned a lot and that s great that you are able to share that with us. Thank you so much, Andrew, for talking with us today. AM: Thank you for having me. AB: Oh, you re welcome. A lot of people are really going to be able to benefit from this. Thank you so much, and have a good night. AM: You too, bye. AB: Bye.

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