Articles, Blog

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

December 9, 2019


– 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 Comments

  • Reply HiHo Kids April 17, 2019 at 7:38 pm

    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

  • Reply Sofia Karjala October 29, 2019 at 4:32 am

    GET THIS GIRL ON THE ELLEN SHOW NOW. ➡

  • Reply eleanor harker October 29, 2019 at 2:33 pm

    how does she go to the bathroom

  • Reply SILAS ORION October 29, 2019 at 8:31 pm

    RIP to her???early rip

  • Reply Abby Rose October 29, 2019 at 10:34 pm

    I have POTS, Ehlers Danlos, Gastroparesis, Mast Cell and fatigue too. My heart goes out to her.

  • Reply HIZZLE X BIZZLE October 31, 2019 at 12:27 am

    I WISH I DIDNT SEE THIS VIDEO ???

  • Reply rashika thomas October 31, 2019 at 11:05 pm

    #THEELLENSHOW

  • Reply Laura Zhang November 1, 2019 at 2:14 am

    People don't understand how lucky they are too walk I'm in a wheelchair I have Sma although I think for her she has it harder then I do because I have never been able to walk i rather have never walked a day in my life than be able to walk and to lose that ability I think that would have been to painful

  • Reply *Puppies Gacha* November 1, 2019 at 3:49 am

    I want to meet that girl and be her friend. She seems nice.

  • Reply *Puppies Gacha* November 1, 2019 at 3:51 am

    I have pots but it's not that bad. If I stand up after laying down though I get really dizzy and my head spins a bit.

  • Reply Decard 101 November 1, 2019 at 9:48 am

    Does anyone know her instagram or social network’s account ?

  • Reply aisha zia November 1, 2019 at 7:00 pm

    She deserves to meet Ellen!

  • Reply rae November 1, 2019 at 8:21 pm

    Shes so gorgeous

  • Reply Entirely Bonkers Individual November 1, 2019 at 9:20 pm

    Does she have any social media? Such a wonderful person

  • Reply Entirely Bonkers Individual November 1, 2019 at 9:49 pm

    #theellenshow

  • Reply gdmichael November 1, 2019 at 10:49 pm

    gotta love that #chronicillness

  • Reply Gavin Northern November 2, 2019 at 2:35 am

    I just want to hug her

  • Reply Arjun Chauhan November 2, 2019 at 7:16 pm

    these episodes are getting darker and darker

  • Reply Jimin_does_got_jams_namjoon November 3, 2019 at 9:44 pm

    Am I the only one that finds her voice soothing even tho it’s from her breathing tubes and her sickness

  • Reply Alannah Ward November 3, 2019 at 10:16 pm

    My sister was friends with this girl in primary but one day in year 4 she stopped coming to school. In year 5 we saw her in a wheel chair with a blanket over her. She we never knew what was wrong with her but she looked almost paralysed. As well as this girl she had a tube going in her nose too. Now I bet she had one of these illnesses to. Its sad to think about that because know one knew what was wrong. Throughout the years we continued seeing her like this. In year six she sat up. Straight in her chair and looked happier. After that me or my sister never saw her again. It's been five years… I hope. She's still ok

  • Reply Mimi B November 4, 2019 at 3:17 am

    This girl is in my prayers ?

  • Reply so annoying November 4, 2019 at 1:43 pm

    Am I the only one who finds her voice very pleasant…like so pleasant?

  • Reply Allison duechle November 5, 2019 at 3:55 am

    I don't mean to be rude but can she eat like

    Mushy food? If they put it in that bag and gose to her stomach?

  • Reply アマンダ November 5, 2019 at 6:30 am

    “You have a nice face” ?

  • Reply Lrak November 5, 2019 at 7:56 am

    "Never seen the doctor and got shots"
    Me: So your parents are anti-vax lol

  • Reply Osian Jones November 5, 2019 at 9:29 pm

    No dumb questions?

  • Reply Fifiweebunkinz November 6, 2019 at 5:51 am

    This is nice but I wish they could have picked two people to do this. Her and someone else who has invisible illness. As a person with invisible I feel like more people judge me and don’t believe me when I tell them what’s wrong with me because they can’t see it. I get glared at and people approach me when I park in handicap. When I wear my mask in stores children gawk and point at me. I’d love for there to be a segment about how to teach children to not act inappropriately around people who use aids like masks in public. Frankly I hate this video.

  • Reply Yahawah is God November 7, 2019 at 12:19 am

    "You have a nice face."

    100% agree.

  • Reply Дима Звонов November 7, 2019 at 3:44 pm

    she is so pretty god ?

  • Reply jenni Bean November 7, 2019 at 11:06 pm

    This was heartbreaking but beautiful…

  • Reply niyati deshmukh November 8, 2019 at 7:12 am

    #TheEllenShow

  • Reply 하자르 November 9, 2019 at 5:23 pm

    Do someone knows her Instagram?

  • Reply Mary&Shanel Channel November 10, 2019 at 3:44 am

    If you never seen a doctor I think you do because when your born there a lot of doctor.

  • Reply samara audrey November 10, 2019 at 5:02 am

    the little girl in the blue shirt is so smart!

  • Reply snsdlana • November 10, 2019 at 2:47 pm

    Ellen please!

  • Reply Simone Studer November 10, 2019 at 5:54 pm

    Ellen de generous!

  • Reply Enjoy the life November 10, 2019 at 8:32 pm

    This girl got into my heart ?♥️

  • Reply a bit of an activist November 11, 2019 at 2:37 pm

    I have the same diseases as her except for like 2 of them. I hope she knows she’s not alone. I feel less alone after watching this honestly ❤️

  • Reply comicblock November 11, 2019 at 5:29 pm

    she's so pretty on god

  • Reply Michael Harris November 12, 2019 at 5:28 am

    Did she vomit in that bag in front of them

  • Reply Anique Mcloughlin November 12, 2019 at 8:35 pm

    She's so pretty tho…. It's so sad

  • Reply Кислая Аскорбинка November 12, 2019 at 8:47 pm

    Does anyone know her Instagram?❤️

  • Reply Lauryn November 13, 2019 at 4:46 am

    2:12 I smell an anti vaxxer mom

  • Reply полина молодых November 14, 2019 at 12:31 pm

    Девочка очень милая….. я надеюсь что она всё-таки поборит своё болезнь❤❤❤❤?

  • Reply Happytivity AJ November 15, 2019 at 7:10 pm

    This girl is so sweet. Despite these difficulties and disabilities, she's living with, she's as positive as a human being can ever be. Much love and respect to her and her family <3

  • Reply Anisa Diamond November 15, 2019 at 7:44 pm

    How much old she is ?

  • Reply FireInk 174 November 16, 2019 at 2:43 am

    Pray for her kids!

  • Reply emma jembo November 17, 2019 at 2:41 am

    i cried

  • Reply Renarde_noir November 17, 2019 at 9:08 am

    Lady:
    “So if I walked down the street what would you think of me?”
    Asian girl: Uhh, I would wonder, like, What desease does she have- “
    Me: ;-;

  • Reply julia Catling November 17, 2019 at 11:42 pm

    this reminds me of jaquie another person who had chronic illness. This video was uploaded about a week before she passed. that girl you had on is so strong and confident.im happy for her and jaquie.

  • Reply Ann VanDyke November 18, 2019 at 2:34 am

    So, with this Mitochondrial disease would it have to do with the organelle Mitochondria? Saying it’s the power source in your cells.

  • Reply Elliott Hill November 18, 2019 at 11:54 am

    Ask me anything…
    Kids: did you ever have a dream…
    …that you could do so much you can do anything

  • Reply Miki Mosky November 18, 2019 at 10:12 pm

    1:40

    …Wow…

  • Reply Gwenn Peterson November 18, 2019 at 11:39 pm

    I have mitochondrial disease

  • Reply æ November 19, 2019 at 1:00 am

    she'd be an amazing friend bro

  • Reply skin deep November 19, 2019 at 1:23 am

    OMG SHES A POTSIE GIRL TOO?! REPRESENT HANEY REPRESENT

  • Reply animals and more kady November 19, 2019 at 2:37 am

    I like=1 extra month so she can live

  • Reply Angel Ugonabo November 19, 2019 at 5:08 pm

    There is a wheelchair accessable stables so u can ride horses
    Look it up

  • Reply Adam Flynn November 19, 2019 at 6:00 pm

    RLP

  • Reply K Armstrong November 19, 2019 at 8:22 pm

    She should watch chronically Jaquie on YouTube. they have a lot of the same, or similar diagnoses.

  • Reply Rene Wegmann November 19, 2019 at 10:08 pm

    You are a wonderful soul .

    #theellenshow .

  • Reply Alexandra Reinemann November 20, 2019 at 2:44 am

    I have Pots and it’s so sad to see someone who is going through this

  • Reply Тимофей Папакин November 21, 2019 at 4:55 pm

    I advise Julia to cryonymize (freeze) and when people learn how to defrost and invent a cure for her illness, she can be healthy!
    Tell it to her!

  • Reply Тимофей Папакин November 21, 2019 at 4:55 pm

    I advise Julia to cryonymize (freeze) and when people learn how to defrost and invent a cure for her illness, she can be healthy!
    Tell it to her!

  • Reply Sam November 22, 2019 at 2:21 pm

    I see a couple of comments on how the music isn't fitting… but it kind of is. This is such a heavy topic, and yet she still makes it light hearted enough for the kids.

  • Reply Daniel García Martín-Romo November 23, 2019 at 9:13 pm

    Sweet angel.
    Life is so unfair

  • Reply Roblox Coder November 24, 2019 at 5:01 am

    I cried so hard wish she could be better!!!

  • Reply Weaponx Liz November 24, 2019 at 5:42 am

    I have pots syndrome as well I faint very often

  • Reply Elizabeth Lolling November 26, 2019 at 4:39 am

    When that girl said that she never went to the doctor and got shots she looked like she was scared and wanted to back away bc if she hasnt gotten vaccines then she could have sickness and get her sick easily which is bad bc her body cant handle if she gets sick

  • Reply chilltime Manatee November 26, 2019 at 5:16 am

    I would love to see a video like this with invisible illnesses/disabilities.

  • Reply Dominick Gonzalez November 26, 2019 at 5:57 am

    Bless her?

  • Reply Dagmara Pietrzak November 26, 2019 at 3:54 pm

    0:57 you mean riding

    Im not being mean respect to this girl

  • Reply 24Lucia Mack November 26, 2019 at 5:46 pm

    anyone know how shes doing now???

  • Reply Bloxotrot BT November 26, 2019 at 11:08 pm

    Ahh famous last words for YouTube

  • Reply Rexy T-rex November 27, 2019 at 3:13 am

    Those kids are so sweet!

  • Reply Episode Gameplays November 27, 2019 at 7:17 pm

    This is not fair! She should not have this condition she/nobody deserves it I would actually swap lives with her if I could. ?

  • Reply PlopWoz469 November 27, 2019 at 11:34 pm

    “I have never gone to the doctor and gotten shots”.
    Teen:wow
    In mind the teen was like antivax

  • Reply RichNb November 27, 2019 at 11:53 pm

    Wow she is hella beautiful what a shame, I hope she does well

  • Reply Tati Carbonell November 28, 2019 at 12:33 am

    She is so sweet. And this is so unfair.

  • Reply Speak Evanese November 28, 2019 at 4:25 am

    Tbh I would give some of my life to her maybe 10 or 20 years just so she could live longer I feel bad ?

  • Reply Kim Hyungie November 28, 2019 at 10:17 am

    She's so beautiful ❤

  • Reply My Vlogs November 29, 2019 at 7:45 pm

    Not gonna lie if I saw her walking down the street my first thought would be “wow that’s a cool wheel chair.” Note even joking?

  • Reply A.J. November 30, 2019 at 3:08 am

    “So is there a life expectancy for this disease?” Jesus just straight out the gate with the hard ball questions.

  • Reply XxIts_Monica305Xx XxIts_Monica305Xx December 1, 2019 at 6:29 am

    Please tell me shed alive right now ???

  • Reply Leila Lovely December 1, 2019 at 9:04 am

    She’s so pure ❤️

  • Reply Malak Abulhassan December 1, 2019 at 9:08 am

    This video just broke my heart ??

  • Reply *Ember* December 1, 2019 at 1:07 pm

    I wish likes could be money to help this girl

  • Reply Little Karo December 1, 2019 at 5:56 pm

    And to think that we ask not to go to school because of a cold

  • Reply Darius Anuran December 3, 2019 at 1:06 pm

    This video actually made me cry

  • Reply Miss Mary Games December 4, 2019 at 3:25 am

    i mean no offence but hearing her voice constantly makes me think i have trouble with breathing, also i stopped swallowing my saliva for the whole video lmao

  • Reply Miss Mary Games December 4, 2019 at 3:27 am

    im in love with this girl

  • Reply Stasa Stankovic December 6, 2019 at 9:22 am

    Okay i started to cry when she said she is gonna die before 25

  • Reply Richard Flynn December 6, 2019 at 3:13 pm

    Upvote if MakeAWish should see this and give her a wish!

  • Reply Fatema Mahudhawala December 7, 2019 at 2:53 am

    I hope she gets cured

  • Reply Y .C December 7, 2019 at 8:23 am

    I know she’s a kid @6:33 but please bring kids that are more aware of how their words can affect other people’s feelings although I know these are adults and they’re aware what they are getting themselves into and it’s also educational for kids have those kids that take everything for granted watch the video ?

  • Reply bffs forever December 8, 2019 at 2:58 am

    the little blonde girl was so rude to her

  • Reply Koala_Gamer December 8, 2019 at 4:10 am

    Aww this is sad

  • Reply Paris Romano December 9, 2019 at 12:13 am

    Ong get Ellen nowwwww

  • Reply Paris Romano December 9, 2019 at 12:14 am

    This girl needs to have a miracle please try and get in touch with Ellen xp?

  • Reply Imrose Alam December 9, 2019 at 5:27 pm

    #TheEllenshow

  • Leave a Reply