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.

100 thoughts on “Kids Meet a Teen With Chronic Illness | Kids Meet | HiHo Kids”

  1. Big thank you to Julia for coming to share her story with the HiHo Kids!
    To learn more about mitochondrial disease visit http://www.mitoaction.org/mito-faq

  2. That one kid who said she’s never gotten shots before is gonna legit die from the flu or something because that ain’t it sis

  3. She's so beautiful, and she talks about her condition in such a mature way…. I don't even have the words! I'm just so happy because I know she made an impression on those kids and on everybody who's watching. If you're reading, I hope you get to do every item on your bucket list <3
    Greetings from a Moroccan in France!

  4. I hope the 10% chance she lives the best life she can happens.
    Edit: also, it may seem she could, because she is living the healthiest she can, her teeth are clean, she has perfect skin (obviously pale but very healthy for a sick person.), she has a perfect mental compatibility. I hope she lives.

  5. I FREAKED OUT WHEN SHE SAID MITOCHONDRIAL DISEASE. I am a teen with mito and it’s so crazy to me to see someone else represented.

  6. The fact that she kept talking about how much she loves babies & she knows she cannot ever have one of her own is so heartbreaking.

  7. Good job girl! You are strong and so nice! I’m italian mum with a SM and i think you have a bright simile! Power an not fear, life is SPECIAL every day, for me!

  8. Shes so pretty and a sweetheart! I wish i could just heal her or give her an andidote or something. She deserves the world.

  9. Wait
    That girl legit said she’s never been to a doctor or had shots

    She’s an anti-vaxx kid .. and y’all put her with someone who’s deathly ill? Wtf?

  10. When that girl says she never went to the doctor um how in the world is she in school they provide that to enter to get into school

  11. I really want to meet this girl, I’ll get Ellen and a horse, I’ll get a random pregnant woman and I’ll take her shopping. Anyone else coming ?

  12. I feel so much for this girl.
    I have Chronic Fatigue Syndrome / Mitochondrial disease and a psychiatrist keeps telling me that it’s in my head and I can think myself better.
    I’m sick for almost 4 years and housebound for 8 months now.
    If people can’t see an illness they presume it’s a mental illness.
    This girl could have been helped so much earlier 😠💔

  13. Thank you Julia for your video. It's one thing to read about these disorders and another to see how people live with them.

  14. I take way to much for granted I’m sorry god we all don’t know how she feels I hope they find a cure I feel so sad for her 😭

  15. why did life did this to her😭😭 she is a lovely person😔😣😭 this is something so tough , like to know that you’re going to die before your 20’s. I don’t even know if it’s going to happen but, i reeeally like realllly hope they find a cure.😢😔 I hope she meets Ellen🙏before her diseases get to the point that she can’t survive anymore😢😖😞

  16. I love you Julia and I'm so sorry I love you soo much and I hope you didn't die in 25 ❤️😭😭😭😭😭😭😭😭😭😭😢😢😢😢😢😢😢😢

  17. this hits home way too hard, I dropped out of high school at 15 to be stuck in a hospital for a year, loosing how to do everything – then stuck at in home nursing- i basically became a baby again. Which sucks because at 18 you don’t really want to have someone help you after you’ve just peed your pants and many other things. I had Lyme, and 5 different co infections, POTS, mitochondrial disease, encephalopathy, chronic pain, lost my speech and eyesight, was stuck in a wheelchair too. I had about 27 different diagnoses that took many years to find out because all doctors will think a young girl just is making this all up in her head. It’s hard being the youngest in the waiting room, isolating. I appreciate and care about different things now. Life is so beautiful and people forget just how precious they are for having bodies that work correctly. Remember that.

  18. “I’ve never been to the doctor or gotten shots”
    Homegirl in the wheelchair has weak lungs and can’t afford being around her omg

  19. Im literary crying here cuz many teen's want to die even tho they dont have any big big big problem like her and……..this girl right here wants to live and be a mom soon but she cant cuz she have a disease that cannot be cured

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