- 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.