- 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.