Kids Meet a Teen with Chronic Illness (Sandor & Michela) | Kids Meet | HiHo Kids


– So how many surgeries have you had? – I’ve had 11. 2017, I was in the hospital
more than I was at home. (classical music) – Hi.
– Hi. – I’m Julia. – I’m Michela. – Nice to meet you.
– You too. – I’m Sandor.
– Nice to meet you. – You’re in a wheel chair. – And have different fluids
hooked up to different parts of your body. – Yes. – How old are you? – I’m 19. – So, what’s the official
name of your disease? – I have Mitochondrial
Disease and then I have like seven or eight more. – Wow. – The two main genetic
ones, or three I guess, Mitochondrial Disease,
Ehlers Danlos Syndrome, and Chronic Intestinal Pseudo-Obstruction, which has shut down my organs. – Were you not born with this? – Their genetic, so, in my
genes, I was born with them, but, they were triggered by something, which was a stomach flu. If you’ve got a defect,
they’re more likely to trigger that defect into being a problem. – So, what was the diagnosing process? – I got sick in sophomore
year of high school. The assumption a lot of
doctors will make is that anxiety is the cause of everything. – You know, you know yourself,
you know when you’re anxious, or when you feel sick. We just happened to find
a really good doctor who believed me 100 percent. – What was your initial reaction? – It’s gonna sound weird, but I was happy. – That you were right. – That I was right, yeah. And then, after that, I did
some research into what it was, and that scared me. Now I’m not happy about it, I’m like, “Could somebody have been
right, and maybe it was just “anxiety and I could get over it?” – How quickly did your disease progress? – In terms of the disease and
how it’s supposed to progress, very quickly, I got diagnosed
with the G.I. condition, and within six months it
was completely shut down. So, now I’m fed by this line. – So you can’t eat? – I can’t eat anything. – I have this bag of fluids,
it’s like three liters, huge. It infuses into my heart, 24/7. – There’s just so much that
I guess I take for granted, just even being able to walk,
and to eat, and to drink, I don’t know what it’d be like
if everything was changed. – It’s crazy to think about. – Yeah. – Do you think in the future
there’s gonna be a more effective way of treating this? – Yeah, I think medicine
evolves over time, but the funding has to be there for it. So, there are a lot of kids dying from Mitochondrial Disease and
because there’s no money in it, people that make meds
don’t really care as much. – So, basically just about the money for them.
– Yeah, yeah. – So, is there a life
expectancy for this disease? – No, if you were to google it, it’s different for everybody because some people it
only affects one thing, and others, like me, it
affects, sort of everything, and will continue to shut
things down until I’m dead. So, it very well may
kill me, and it very well may kill me before I’m 25. – It seems like you’re more
comfortable with talking about that, so what was the process like? – A lot of therapy, and a lot of crying, and just talking with my family about it, and sort of getting used
to the idea of death, because everybody dies, so
it’s not an abstract concept. Usually, why it’s scary
to people is because they feel like they have not
completed their life and they want to live more. – Have you ever driven a car? – No, I can’t because I faint, but, this guy cost as much as
a car, so I call it my car. – What are its features? – It goes up, it can tilt back, like this, all the way, like, really back, and then my legs can go all the way up. – I have a question. – Yeah. – How has your education
and schooling been effected? – I had to drop out of school. I would rather do things and live my life, than
worry about studying and getting my diploma. I’d much rather go on trips
like this and do fun things that I can check off my bucket list. – What is on your bucket list? – I have a lot on my bucket
list, let me pull it out. Go on a shopping spree to
all my favorite stores. (Mickayla laughs)
– See, some of these are really dumb. Spend time with horses, and
find a way I can ride one, because I can’t get up on a horse, but, I’d love to find
an adaptive way of still connecting that way. Watch a live birth. I love babies, and if I
were to get cured tomorrow, I’d probably wanna be
a midwife or something. Meet Ellen. Duh. (Julia laughs) – Ellen.
– Ellen, if you’re there, I’d love to meet you. – Thank you so much, yeah.
– It was so nice meeting you. I’ll give you a hug. – Nice meeting you too.
– Absolutely. It was nice meeting you.
– Nice meeting you. Thank you very much
for telling your story. – Of course.

Kids Meet a Teen With Chronic Illness | Kids Meet | HiHo Kids

Kids Meet a Teen With Chronic Illness | Kids Meet | HiHo Kids


– So is there a life
expectancy for this disease? – It very well may kill me and it very well may
kill me before I’m 25. Yeah. Really heavy. (soft upbeat music) Did you know anything about who you were going to be meeting beforehand? – No. – You guys sprung one on her (laughs). (group laughs) You can ask me anything. – Anything? – Anything. – Okay. (both laugh) – Clearly I’m in a wheelchair and I have a tube in my nose and I’m on oxygen. Do you ever stare at people when they look a little different? Yeah I used to also. I still do. If you saw me walking down the street what would you think? – I would like wonder what does she have? What disease or something
what does she have? – So what was the diagnosing process? – The assumption a lot
of doctors will make is that anxiety is the
cause of everything. So it took a lot of testing to prove that this wasn’t anxiety,
and that it was actually very significant and serious
that needed to be addressed. – So what’s the official
name of your disease? – I have quite a few. I have a genetic condition
called Mitochondrial disease, which has shut down my organs. – Which organs? – My stomach, my small
intestine, my colon, and then my lungs. – Wow. – I have Ehlers-Danlos syndrome. I have POTS. Chronic intestinal pseudo-obstruction. Mast cell activation disorder and a couple of others that I can’t really remember the name of them (chuckles) right now. And then the reason I’m in a wheelchair is if I stand up I drop to the floor like a sack of potatoes (laughs). Last year I spent more days in the hospital then I did at home. – I’ve never seen a doctor. – Wow. – Yeah, I’ve never went to the doctor, only got like shots. – What do you do on a normal day? – I go to school, do
homework, first priority, and then I do some video
games and we have dinner and then I go to sleep. – I would maybe be able
to do one of those things. So Mitochondrial disease means that things that require energy
inside my body don’t work well. If they didn’t work at all
I’d be dead (chuckles). – How long have you had this sickness? – I got sick four years ago. I was 15 in high school. – It must be really tough. – Yeah it was really tough. Pretty much anything a
normal teen would want to do, I was able to do and then I got sick and all of a sudden I
couldn’t do it any more. – That chair would ruin my life because my life is running. I do soccer, basketball. I was gonna do softball
but then my dad forgot to sign me up. – I used to play softball
before I got sick. I rode horses and swam. I was on a competitive swim team. – What do you miss the most? – Babysitting because I love babies. Do you wanna be a mom when you grow up? Yeah? I did too. – Will you be able to? – My condition is passed on. That’d be not fair to those kids because it would be setting
them up for things like this. – So you can’t eat. – Can’t eat anything. Can’t drink water. Can’t even swallow my spit
which is why I have this. Sorry, it’s gross. – Do you eat veggies or fruits? – I can’t eat anything. Okay so this is my mom and she’s gonna pull it out so I can show you. This is my meal. – What is it? – It’s called TPN. – Looks like breast milk. – How do you stay alive? How do you not get so hungry? – TPN goes all the way to my heart, and it gets absorbed in my blood stream. – I mean drinking is okay but eating is. I love eating. – Me too. – What was the last thing you ever ate? – Sweet potato fries (chuckles). – (inhales) Will you ever get better? – So currently there is no cure for Mitochondrial disease. And there’s no cure for any of the other diseases I have. – Do you think in the future, this is kind of a dumb question. – No dumb questions. – Do you think in the future there’s gonna be a more effective
way of treating this disease? – I think medicine evolves over time, but the funding has to be there for it. For me my lungs are
shutting down and my GI system has already shut down. So it very well may
kill me and it very well may kill me before I’m 25. – Does that scare you? – It’s something that I think everybody jokes about. I even joke about it. I’m like make sure you
write this on my tombstone. But thinking about it is so scary. I know that I will likely
die before my parents and that’s something that I have to go to therapy to talk about
because it’s very heavy. The way that I can be proactive with it is doing stuff. – What is on your bucket list? – I brought along my bucket list. Let me pull it out. Go on a shopping spree to
all my favorite stores. (children giggle) See some of these are really dumb. Spend time with horses and
find a way I can ride one because I can’t get up on a horse. But I’d love to find an
adaptive way of still connecting that way. Watch a live birth. I love babies and if I
were to get cured tomorrow, I’d probably wanna be
a midwife or something. Meet Ellen. Duh. (all giggle) – Ellen.
– Ellen. If you’re there I’d love to meet you. – I’ve always had a dream
of being a pro runner and so if I couldn’t do
that than I would be like, what am I here for (giggles). – Do you think you’d be
depressed like very sad? – I’d be very depressed. How have you dealt with it? – I’m as positive as I can be and so I try and see friends when I can. I love online shopping and I just try and make
the most of out everything because you never know
how long you have left. – That was really inspirational. (all laugh) – Thank you. – Of course it was nice meeting you. – You too. – You have a nice face. – Oh thank you. – Hi I’m Juliette. Thanks for watching my
episode of Kids Meet. To learn more about Mitochondrial disease check for a link down below. And don’t forget to subscribe to HiHo. Bye.