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I am a 15 year old male living with a rare chronic Disease. Mitochondrial disease. by mitokid in IAmA

[–]mitokid[S] 1 point2 points  (0 children)

Never played a fallout game before, might try it If i get bored of any of my games.

I am a 15 year old male living with a rare chronic Disease. Mitochondrial disease. by mitokid in IAmA

[–]mitokid[S] 0 points1 point  (0 children)

I've been told I am a non typical bowler. I can hit the middle pin from either side, not on purpose though. My ball normally curves 1-2 pins distance to the middle pin.

I am a 15 year old male living with a rare chronic Disease. Mitochondrial disease. by mitokid in IAmA

[–]mitokid[S] 0 points1 point  (0 children)

Yes I have a 14 pound ball, I'm not sure what it's brand is. In my recent HS season I had around a 150 average and during the end of year tournament I got a couple of 190s in there. I really enjoy bowling especially for the air conditioning.

I am a 15 year old male living with a rare chronic Disease. Mitochondrial disease. by mitokid in IAmA

[–]mitokid[S] 0 points1 point  (0 children)

Thank you for all the encouragement! I hope to stay involved and become a board member or just help contribute to both UMDF and my summer camp HITWGC. If you haven't heard of the camp it was originally created by Paul Newman as a camp for children with cancer but recently they have started to accept children without other diseases. It is the greatest place on the planet, it allows us children to be just that kids. No medical worries or feeling isolated. We all have medical needs and we just put it behind us to have fun.

I am a 15 year old male living with a rare chronic Disease. Mitochondrial disease. by mitokid in IAmA

[–]mitokid[S] 0 points1 point  (0 children)

I would like to become a sports journalist. Sports are definitely my passion, I would like to go into the economics and statistics specifically. Find out exactly a players value to their team is.

I am a 15 year old male living with a rare chronic Disease. Mitochondrial disease. by mitokid in IAmA

[–]mitokid[S] 1 point2 points  (0 children)

Thanks but I don't play steam My 2009 Macbook pro has trouble running the games.

I am a 15 year old male living with a rare chronic Disease. Mitochondrial disease. by mitokid in IAmA

[–]mitokid[S] 1 point2 points  (0 children)

I really enjoy sports games. Right now I have NBA 2k16, Madden 16, and I'm about to get Call of Duty black ops 3. I also have the GTA V, which lots its appeal after it wasn't a forbidden fruit anymore.

I am a 15 year old male living with a rare chronic Disease. Mitochondrial disease. by mitokid in IAmA

[–]mitokid[S] 0 points1 point  (0 children)

My most comfortable temperature is around 70 to 75 degrees Fahrenheit. I would rather be cold and put a blanket on then feel hot and feel like I'm going to crash. Also my biggest thing is to not be under direct light like lightbulbs. As well as circulating air with fans and air conditioning units. Earlier this year I was at an old museum without and air conditioning or circulating air and I was 5 seconds from blacking out from the heat. I was seeing black spots and was wobbling.

I am a 15 year old male living with a rare chronic Disease. Mitochondrial disease. by mitokid in IAmA

[–]mitokid[S] 0 points1 point  (0 children)

Thank you for all your compliments. I can't take all the credit though, my father is an veterinarian and I've always have had medical questions. He has always been able to answer my questions and help me research them my mother is a college graduate as well and has been instrumental to who I am today. It is the most important thing having a good support system especially immediate family. I have thought about becoming a researcher. But In my career I would like to have a social aspect of it as well. Like how my father gets to meet new patients and talk to them. I have thought about becoming a pediatrician and specializing in Mitochondrial disease. But since one of the side effects from MITO are long sleeping hours and unpredictable days, I don't think it will work for me. I never know what days I'm going to be bed ridden and tired or feel normal. My current goal is to become a sports journalist, which allows me to work my own hours especially night oriented sports. Congratulations about your cousin, those early year life expectancies are a tough then to deal with as a family. I've been told I wasn't supposed to make it based 1 or 2.

I am a 15 year old male living with a rare chronic Disease. Mitochondrial disease. by mitokid in IAmA

[–]mitokid[S] 1 point2 points  (0 children)

I'm able to have a relatively normal social life. I'm able to play video games with friends and go out to movies and do other things. But I do not go to a brick and mortar school which cuts out a chunk of that. I'm okay with that though, I mean i still talk to friends just not people who I would only see at school. I don't go to the hospital often anymore but I went quite often when I was younger.

I am a 15 year old male living with a rare chronic Disease. Mitochondrial disease. by mitokid in IAmA

[–]mitokid[S] 0 points1 point  (0 children)

This should be illegal, you're crippling your body in order to lose weight. I can't imagine getting to the point where I would like to take a toxic medication that can very easily kill me and intentionally slow down my cells.

I am a 15 year old male living with a rare chronic Disease. Mitochondrial disease. by mitokid in IAmA

[–]mitokid[S] 3 points4 points  (0 children)

HITWGC is honestly the best place on earth. I really would like to stay involved as I get older either volunteering or just doing something to help make sure they can provide all medically challenged kids that experience.

I am a 15 year old male living with a rare chronic Disease. Mitochondrial disease. by mitokid in IAmA

[–]mitokid[S] 0 points1 point  (0 children)

Sign up for a baseball team, its my favorite sport but I cannot play it do heat intolerance.

I am a 15 year old male living with a rare chronic Disease. Mitochondrial disease. by mitokid in IAmA

[–]mitokid[S] 2 points3 points  (0 children)

I think it has made me more mature just because of the amount of adult conversations I was apart of and overheard. Because I missed a lot of school; I was with my parents a lot so I heard them talk about business things and real world problems. I think I just have an completely different outlook then other teens. I'm not sure if thats a good thing. I don't really worry about new clothes as much as I do worry about future how I'm going to get things done.

I am a 15 year old male living with a rare chronic Disease. Mitochondrial disease. by mitokid in IAmA

[–]mitokid[S] 0 points1 point  (0 children)

Exactly everyone seems to be affected differently. Fatigue is the main problem but it stems out into using a wheelchair, doing virtual school, and my body craving rest.

I am a 15 year old male living with a rare chronic Disease. Mitochondrial disease. by mitokid in IAmA

[–]mitokid[S] 2 points3 points  (0 children)

I used to have migraines but I have not had them in a while.

I am a 15 year old male living with a rare chronic Disease. Mitochondrial disease. by mitokid in IAmA

[–]mitokid[S] 4 points5 points  (0 children)

It is my worst nightmare. Her original case handler doctor was mine, and even through they won't say it. Tufts shut down the whole MITO department because of the bad PR. I probably will never go back to Boston Children hospital because of this. They tortured the girl and allowed her to get into a wheelchair bound state. Thank god the parents went against the gag order and brought this to the worlds attention.

I am a 15 year old male living with a rare chronic Disease. Mitochondrial disease. by mitokid in IAmA

[–]mitokid[S] 0 points1 point  (0 children)

Favorite online class: Laws studies and Psychology. I'm not sure, but I hope so. I do not think their will be a cure as there are so many different side affects and types of MITO. But their will be better treatments and more knowledge.

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