I would love for the kids to meet someone with an invisible chronic disease like moderate/severe Crohns disease. I'm in my 30's and look perfectly healthy but am very sick on the inside. Treatment for Crohn's Disease suppresses immune system so if a cashier or anyone at the grocery store has a cold or anything worse, I will get it and it will make me very sick and take me twice as long to recover. A flu puts me in hospital. It's extremely hard when I look perfectly healthy but I'm very sick, some people, friends and even family dont believe me because they cant see it.
Q B I understand! Got my Dx for Crohn’s just before I turned 16, 30 years ago. People, including family has complained I was faking being sick the day after I came home from hospital! You wouldn’t know I was ill unless I was in the middle of a flare and was stuck out! In the last 15 years other illnesses have popped up. I thought I hurt then! 💔
I don't think staring is unkind. I have lots of big scars on my arms and I let people have a look if they want. They can't help it anyways, it's human nature to want to take a closer look at unusual sights and I don't think trying to suppress that helps anybody. I even feel some people are more comfortable around me after they got the chance to give in to the urge.
Those kids are so respectful. I feel like every child is innocent. They start judging and doing things they shouldn’t because of their parents and their education.
Yeah, I have one of the disorders that she listed (EDS). It’s really sad to learn that you won’t ever be able to have kids, especially when you’re only 13 years old, in my case :(
With Ehlers Danlos Syndrome, a lot of the conditions are common comorbidities. So POTS and MCAS are pretty much an almost everyone with EDS gets as well. (Source: me, who has EDS)
Unfortunately, Drs. Are lazy and want the easiest explanation. I have dysautonomia and was misdiagnosed for many years, so what could have been easily treated has disabled me.
Emma Wolfe those are facts it’s sad that doctors deal with having to tell people their gonna die everyday this girl deserves a sit down with Ellen also Emma ur pretty just like this girl saying that out of my Heart for u and for her please don’t take life for granted be thankful
I can't imagine the psychological trauma of suddenly becoming ill, losing the lifestyle you had before and having to deal with the fact that you will pass away far too early. I hope she finds light and happiness in her day to day life anyway.
I was born with my condition/ chronic illnesses so I feel for her going through the loss of her quality of life. But I have an idea of what she is going through.
It is very hard, there is a grieving process the same as losing a loved one. My body started seriously giving up in my early mid 20s and i was forced to stop doing the things i loved. Im lucky in that I never wanted kids because i now will never get the chance. I suffer with similar issues as this person but not as severe and its unlikely to shorten my life, but its a life of constant pain and fatigue that never goes away, and the more i try to do, every day things people take for granted (going shopping, cleaning, even taking a shower), makes it all worse.
@@FaenumVena you sound like me. It's definitely a grieving process. It's good that she's able to get counseling. I probably should look into it too. It's crazy the little things you miss being able to do - like you said showering. I miss being able to clean, too. So freaking difficult to see a mess and have to leave it be because I just don't have the energy for it. I've definitely cried over all the things that I've lost, still have more to go I'm sure.
Colosious Composter Uhm, are you sure you we’re watching this? The young boy said “okay, this is a dumb question--“ she spit, and replied “no dumb questions”
Rachel Johnson I know. I have a lot of allergies and the doctor said it was just anxiety. Three years later and in the hospital that doctor should be fired.
IKR like I was saying that my knees are weak and bend backward all the time because she. They bend forward I fall and he was like probably anxiety (this was a substitute my real doc was on vacay) and I was like bish how
People told me my stomach problems were anxiety for years. It’s true, I’m a very anxious person. But that wasn’t anxiety, that was microscopic colitis. Not serious, but still would have rather people look into my symptoms to help me alleviate them instead of being told to take deep breaths
“That’d be... not fair to those kids” it’s so sad that people with genetic problems think like that most of the time 😔 I really hope some day someone finds the cure for her condition... this video was so touching.
Theres a robotic brace that moves you if you are disabled but it is over 100,000 dollars. Which sucks becuase we disableds have to pay so Much money just to be human
With genetic diseases that have no cure and are lethal it's the only right thing/responsible way to think, unfortunately. Knowing you're condemned to a very short life because of your genetics has to be one of the most difficult things to deal with, especially compounded with the inability to do things that come easy to most other people - including people with other kinds of disabilities (people who are paralyzed waist down can still ride horses with special seats, etc.). I wouldn't want to have a kid knowing they'd likely have to go through what I did if I had such a disease. Plus, pregnancy would probably put a huge strain on her already failing body. And the baby may likely not get the ideal nutrients - I don't think bagged liquid nutrients are the perfect replacement for real food in a balanced diet. I've heard it's hard to stay strong on nutrient IV bags.
I have all of those conditions except mitochondrial disease.. I passed them to all three of my Spawn. Watching them deal with the symptoms is heartbreaking, but at least they don't have to wait 50 years for a diagnosis..
I have multiple genetic disorders (Ehlers Danlos Syndrome, POTS, MCAS) and mental health disorders that I have because they run in my family so I don't feel like it would be fair to give those to my children. Luckily, I'm a lesbian so there's a second person who can carry a child in the relationship, AND i want to adopt :')
@@newname5205 Which flowers do you think someone would rather pick? The beautiful ones, or the misshapen or wilted ones? If you answered the beautiful ones, you just answered your own question. Also, people who suffered a lot in their life tend to be the nicest people, despite how cynical their outlook on life may be.
I don’t know if anyone ever kept up with her, but she passed away not too long ago. Like a couple weeks ago or maybe even shorter. She did some pretty cool things before she passed away. Rest In Peace sweetheart. Edit: she died in December actually. I just had heard about it recently so I assumed it was recent
Katia Tannus I was surprised that it came in at 14/15. That means it could happen to anyone at any time, and I think that was the scariest part of the video to me.
I turn 25 in two days and wow this struck me hard. I just hope and wish this beautiful, wise and strong woman gets to see and experience an amazing amount of years before she passes.
I had a dr that had to rule out anxiety for my GI conditions. Yes anxiety exacerbates them, as anxiety does this for a lot of things besides GI issues, but it's not the root cause of them just because they're milder when I'm not extremely anxious. Like I have mild GAD and my counselor didn't feel it was necessary to send me to a psychiatrist for medications as I can control most of it by talking through it and explaining I can't do xyz at the moment because of it. Sometimes I can do it 30 minutes later, sometimes it's 30 days later.
Or if you have a diagnosed disability that affects your whole body any complaint you have is sometime automatically attributed to that one diagnosis. But like with Julia, you can most definitely have more than one diagnosis, even if they’re somewhat connected.
I feel like knowing you’re going to die and just waiting for death and trying to live life to the fullest before it happens is one of the worst feelings and psychological horrors ever
I agree. Although I've heard some people say that it's freeing and I can see why. If I knew I had only a few years to live I'd stop working and look for a way to spend those days not worrying about anything but what's on my bucket list. But that would not be me, I wouldn't find it freeing since I fear being unable to move, being unable to remember my past, stuff like that. I cherish my freedom and my memories. I'd rather be able to think I'll have a nice long life (even if it'll likely not be as long as I'd like it) and never worry about what comes after.
What's funny is that that's life for 100% of humanity. We think only terminally ill people have to deal with that, which probably makes it even worse for them. We're ALL going to die. You might die before they do.
It made me sad too, except that there is a lot that we can do to prolong her life that has already been done. If it weren't for the oxygen and TPN she would already be dead, and if it weren't for the central line she couldn't get the TPN, and if it weren't for the NG tube and wheelchair she would have a much lower quality of life. I agree that there is more room to grow and would love to cure some of those conditions, but we need to also focus on making sure that the treatments we do have are being made available to all the people that need them (which it currently isn't).
@@LeonidasSthlm the important thing to remember tho is that every disease has scientists behind it trying to work on it. Mito is at the bottom of the list thought because it is so rare. Conditions like cancer and Alzheimers get more funding and attention because they are much more common. It's very possible for all diseases cures won't come for a very long time. The only reason I say all this is so people see that these foundations need donations and awareness, and people don't think a cure is just around the corner.
stan wekimeki I have EDS, POTS and mass activation and some others. Yeh I don’t remember them but i think it’s mostly bc I try not to think about it. Like sure I gotta a tube in my chest and stomach but I don’t really want to let it affect me
Amanda Newman Exactly, I have EDS too and most of us have a handful of comorbid conditions. I have suspected POTS, adrenal insufficiency, IBS, vocal chord dysfunction, PCOS... that’s all stemming from EDS! It really sucks.
@@heidibullock1853 Why are they thinking at the start that it's "just" anxiety anyway? What are the early symptoms besides I assume, feeling weakness (which can be a lot of things anyway, not just emotional stuff)? Anyway, that's very lazy of the doctors to assume anxiety. Anxiety is a serious issue and needs treatment/environmental changes, etc. but such assumptions by doctors even today are used as an excuse to do nothing medically about it because the doctors aren't sure. If they can't find a cause they need to dig deeper for rarer diseases 1st and then treat the anxiety if that's what it truly is.
And I apologize I heard it was in December when I responded too many people that's what somebody told me and I'm sorry to say that I was wrong but I feel very badly for her parents in my heart truly goes out to them and I know Julia is in heaven no longer in pain or sickness
@@theresa5059 Ellen Degeneres, her show has been inviting a lot of inspiring person and people around the world. She supports all of kind activities, gives student money to pay their loan, surprise people with gift, and many other thing. In 2016, she received medal of freedom from President Obama. She inspire bunch of people to not give up on their recent condition. #cmiiw
(coming from someone who also has ehlers danlos syndrome, pots, etc and is on tpn) this is absolutely amazing and i hope to see more content like this. sending endless love and prayers to julia and her family.
I stopped growing at 12 (I was a tall kiddo...5ft at age 8...) and when doctors could no longer dismiss my body pains as growing pains, they moved on to "must be anxiety" or "you're just an emotional teenage girl looking for attention." I didn't get properly diagnosed with anything until at least age 15, and the most critical of those disorders weren't diagnosed until I was 22 and 23. Some doctors are idiots. No, anxiety did not cause my shoulder to dislocate 16 times this week, and anxiety did not cause the collapse and pronation of my hips, knees, and ankles.
Oh I could just cry for JOY right now... that probably sounds odd, but I have all the same things this girl has. I am 28 now though. To see it on a bigger platform gives me hope. So much. Ehlers-Danlos Syndrome is something you are born with and it is often the catalyst for a list of disorders that this sweet girl and I have. Most of these are vastly misunderstood and we are often treated terribly by medical professionals. WE NEED AWARENESS, FUNDING, AND RESEARCH AND WE NEED IT NOW. I refuse to continue sugarcoating the fact that these disorders cause mass amounts of suffering. So when you can't even at least get approval for a wheelchair or pricey meds (let alone bigger things like a caregiver, electric wheelchair, treatments, procedures, etc.) it is infuriating, invalidating, and just plain hurtful. For example, we shouldn't ever have sit in an ER rolling in pain while the dr rolls their eyes and goes to google your disorder(s) only to come in and announce that you don't get any pain meds and you just need to calm down and go home. If you think it doesn't happen, ask any one of us. Something has to change before we lose anymore to not only just these issues, but also to suicide because they just can't handle the pain anymore. No more. No more sugarcoating. HUGE thank you to Cut/HiHo Kids for doing this. It helps more than you know ❤
I feel the exact same way!! I've been hoping they'd do one of these to help bring awareness to conditions like EDS ad mitochondrial disease. My medical conditions have taken so much from me, and there's so much misunderstanding about them, so I am very very happy they did this
So Mitochondrial Disease is actually the catalyst for the vast amount of her severe systems and organ failure. There is a huge difference in terms of severity.. unless you have a bad case of Vascular EDS. The vast majority of those with EDS have a normal lifespan.. Julia is active in the Mito community and we both have the same mutation and disease progression. (i use an electric wheelchair, use oxygen and am on TPN with a small amount of tube feeding, just got out of a 4 month hospitalization) Almost all the young girls who have Mitochondrial disease get diagnosed with Ehlers-Danlos Syndrome at some point in their diagnostic process.Most specialists agree that it's mainly because very early in their disease progression Mitochondrial Disease can resemble a very severe case of EDS and the hyper awarness of the disease and it's loose diagnostic criteria has gotten by the medical sphere over the last 5 years. I was diagnosed with Ehlers Danlos syndrome type 3 after I had a stroke 4 years ago. I was active in the EDS community Though on average I was extremly sick in comparison to the average EDS patient, people in the community would se me as a "Look how bad my EDS could get". It's heartbreaking to be honest. Many members of my mother family died before they even finshed grade school. As I started going from organ dysfunction to organ failure (theres a huge difference there, It became increasingly clear that the likelyhood that it was exclusivly EDS was low. Testing brought back the results of Mitochondrial Disease I couldnt believe that it wasnt pure EDS. At that point my disease progressed heavily and while there is no straight forward treatment, focusing on pallative care and agressive treatment during surgery, ICU stays, nutrition, and sepsis can make a difference in how far those events are progressing your disease. For many Mito patients dont get that treatment until it's too late and you cant get that function back. As much as being undiagnosed sucks, We can't even do proper research to figure out why true EDS 3 patients have the illness (when all the others have a recognized genetic basis.)or to look for treatment. It's unfair to *everyone*in the community to have such an undefined illness. People who mainly have dysautonomia and hypermobility shouldnt have to think the could die from type 3 EDS, and it's' just as unfair for the patients that have such severe symptoms and get fixated on this stuff. I usually know 2-4 people who die of mito each month. a figurehead for how severe EDS could hypothetically be. Its heart breaking seeing people who have so much freedom and ability to focusing on those things (It's not their fault its an illness community thing). I PSA-if you get rapid progression of your illness or have significant muscle weakness (not fatigue or deconditioning) talk about it with your geneticist.
As someone with a genetic heart condition, it really resonated with me when she said "It would not be fair to those kids." I only have one major disease and it is nowhere near as traumatic or life-altering as everything she has gone through, but I still stay awake at night thinking about if I would be able to live with myself if any future children I have went through all the testing, doctor's visits, and life-altering adaptations that I went through. She is so strong and amazing to smile because I know that somedays make it incredibly difficult.
When the boy said, "I love eating!" And she says "me too" but she can't eat for rest of her life.... That broke my heart in millions of pieces!! Oh God why so cruel 😢😢
She might not start a family She might not be “Normal” She might not go to prom She might not get cured But she will and did put a smile on everyone’s face💞
Swimming, shopping, capabilities...she lost her way of life at 15. I just turned 15 and I share so many interests with her - I can’t even imagine what that would be like :((
@@lyy4227 You say not funny, but I have mitochondrial disease just like the teen in the video and think this is hilarious. Able-bodied people are so careful about everything. But if you've ever met someone who have chronic illness, you soon learn that we can have a pretty dark sense of humor. Lol. Yeah, I'll probably die before the age of 25, but that's just how it works for us. my other friends who have mito and I make jokes about dying all the time. Laughing about it makes us feel better about our fates. It normalizes it. My friend: *coughs* Me: "You okay?" Friend: "Yeah, just dying a little faster than normal" LOL
I personally have Ehlers Danlose Syndrome and POTS and it’s so easy to wonder why my life is so difficult but it’s humbling to remember I don’t have it like others. I once met a woman with multiple types of EDS and she had the same feeding system but her favourite hobby was cooking. It’s crazy to think that the people around us can live in the same situation yet so differently at the same time. It’s amazing to see how brave she is about it!
I closed my eyes and took a deep breath i really didnt want to laugh but now i can know other people did im slightly relieved but still kinda annoyed w myself no offense
As a teen who also has chronic illnesses, a few of the same ones that she has, this was amazing to watch the kids interact with her and hear their questions. Great video. :)
@@callum__w I have Chronic illnesses and some days I can just be a normal kid with pain. I also have days when I the pain is so bad that I can't even leave my bed. I looked at her channel and she must have filmed those on a particularly good day. Also, alot of chronic illnesses are invisible. Some days I can walk around a little while others I'm in my wheelchair.
@@callum__w I totally understand where your coming from. I wasn't trying to sound like I was mad. I agree with you that it is very mean to the people with chronic illness when people lie about having it.
Her parents have probably taught her to give people compliments as a social formality. And she probably couldn't think of anything that wasn't medical related or sounded somewhat mean. In my lifetime, I've had people awkwardly tell me that I have cute feet or kind eyes for the same reasons. I'll tell them I like their dress, and they look me up and down trying to figure out a reciprocal compliment but only see crutches and a service dog, so they talk about my feet, my hair, or my face. Every. Single. Time. The polar ends of our bodies are the least likely to have a physical health problem that they could accidentally insult us over. And many times, physically disabled people don't have on trendy clothes to compliment...we wear what is comfortable and easy to put on/take off, like sweatpants or leggings.
IMPORTANT! ~ she said that she would love to be able to ride and connect with horses, now i'm not sure about america but in england there's a charity called RDA( riding for the disabled association ) that have both horses and people trained to the level of understanding and care and also machines to help lift and move people so they are able to sit on the horses. an amazing charity and i really hope there's one over seas that she can get in touch with really worth the while!
There is a version of the RDA in North America called the North American Handicapped Riding Association, or NARHA for short. they are supposedly found in both the USA and Canada(I haven't really check forlocations), my best guess is they have at least one location in the Southwest.
There are various riding groups like that in every state. Quarters and other large breeds are used for clients like her with chairs and heavy equipment
Girl: explains how she basically cannot do anything background music: dOo Doo doo dOo edit: tysm for the likes btw :) but i still feel bad for the girl..
I’m also a teen with ehlers danlos syndrome. We think i also have POTs and MCAS but it’s such a struggle With the doctors and I’m only 15 currently. To see someone like this spreading information I’m really grateful, but I feel really bad that she was in this position, I’ve just seen she’s passed away. Rest in peace
I was told to be borderline ehlers danlos syndrome when I was 13, I'm currently 17 and hopefully I will get a full diagnosis soon. I'm suspected to be autistic and I have had CDH, and asthma along with one functioning lung
Okay, I cried.. what a beautiful and humbling video. She is phenomenal. I hope she gets to accomplish her entire bucket list. If I were to have another baby, I wouldn't hesitate to let her be a part of the birth. Also, I hope Ellen sees this!!!!
I really feel for this girl. I also have POTS and can definitely relate to the “standing up and dropping to the floor” part :( It’s good seeing children able to ask questions and become educated on medical conditions they probably didn’t know about before.
I feel this so much.. I’m chronically ill, and I’ve had everything she’s had at one point. It’s, uhm.. tough. But you manage. Just got out of the E.R for a heart attack and almost a stroke. Best luck my spoonie buds.
She has been vaccinated, says so herself. "I've never been to the doctor, only got like shots" (in the subtitles). It's a bit confusing, but she just wants to say that she's never been to a doctor due to illness.
pizzalizza 18 Claire Wineland! Amazingly beautiful girl in every way possible... She died a few months ago, but touched so many with her openness and her beauty. She will never be forgotten.
Random Channel getting diagnosed as young as possible is the best thing that can happen because for some of the illnesses that she has there is some preventive care you can use but it’s really hard. I was diagnosed two days after I turned 13 and I’m 15 now
i have some of the same conditions that she does, and i also got sick around 15. it means a lot that more awareness is being brought to these rare/unknown chronic illnesses.
Hannah Coleman I’m so sorry. I would like to do something for you but I don’t know what. I’m just 11. Maybe we could be TH-cam friends. If you like music you could help me pick my next song to record. What do you think? 🙋🏻♂️
Trinity Paquin aw ty. i got diagnosed just over a year ago. i hate hate hate pots but i’m thankful that i did get diagnosed (eventually) instead of my symptoms just being passed off as anxiety like they were for awhile.
I have a few of her disabilities, eds and pots. They effect me differently and most of the time i don't look disabled but there are times i can't walk or even stand. Im very glad Julia could be in this video and educate people about her disabilities.
I relate I have EDs, asthma. One functioning lung, CDH and some days I'm in so much pain my legs won't functioning properly but I'm only 17, so I try not to "look disabled" because I'm so young and I don't want to look the odd one out
Kinda weird that my names Julia and I also have EDS and POTS. I also got sick at 14 and have missed out on all the teenage things. I’ve been waiting for an episode like this. I’m very glad that they made this video. The kids are so kind and understanding. So glad they brought this to light.
I have POTS as well. I got sick when I was nine, and it's been 10 years now. It's interesting that I never hear about it outside of these little corners of the internet, but I am finding more and more people with it. I'm also glad this video was made because although I can function and am in a much better condition than the girl in the video, I've also missed out on so much of the "teenage experience", and having a chronic illness can be so draining. I'm glad they were exposed to an illness that doesn't go away.
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
Every journey must have an end. I'm sorry Julia's had to end too early. RIP Julia. I hope to meet her one day in heaven, riding horses across the clouds
Wow. That really moved me. Young people are often so kind and intuitive. I'm sending love to you, Julia, and I wish you a beautiful life with an ever growing bucket list. ❤️
when she said that doctors often think that anxiety is the cause to everything i relate so much. i dont have it nearly as bad as her but i have chronic sinusitis which was undiagnosed for almost a year because they were sure i was faking it
Big thank you to Julia for coming to share her story with the HiHo Kids!
To learn more about mitochondrial disease visit www.mitoaction.org/mito-faq
I would love for the kids to meet someone with an invisible chronic disease like moderate/severe Crohns disease. I'm in my 30's and look perfectly healthy but am very sick on the inside. Treatment for Crohn's Disease suppresses immune system so if a cashier or anyone at the grocery store has a cold or anything worse, I will get it and it will make me very sick and take me twice as long to recover. A flu puts me in hospital. It's extremely hard when I look perfectly healthy but I'm very sick, some people, friends and even family dont believe me because they cant see it.
Please pin a comment (such as mine) clarifying that the girl in the camo jacket was vaccinated and directing viewers to read the captions. Thank you.
Q B I understand! Got my Dx for Crohn’s just before I turned 16, 30 years ago. People, including family has complained I was faking being sick the day after I came home from hospital! You wouldn’t know I was ill unless I was in the middle of a flare and was stuck out! In the last 15 years other illnesses have popped up. I thought I hurt then! 💔
@@merangel3988 yep, I make the half joke that once you get one auto-immune disease, 'you gotta catch'em all". 😅😥
Meet a person that stutters
The fact that the little girl can girl can admit she stares at people when there different is amazing at that age she is so sweet
2:54 & 7:03 ~so cute:(~
And the fact that she hesitated saying that, knowing it’s unkind, makes it even better.
@@TolumniaMC and then decided to be truthful and honest eventually..
Mochi _26 *they’re
I don't think staring is unkind. I have lots of big scars on my arms and I let people have a look if they want. They can't help it anyways, it's human nature to want to take a closer look at unusual sights and I don't think trying to suppress that helps anybody. I even feel some people are more comfortable around me after they got the chance to give in to the urge.
"You have a nice face" coming from a kid is the ultimate compliment
True, and she is really pretty though.
@@Yeemoeder she is 😌
@@sarahcgkk a kid once said 'are you wearing makeup?' because my cheeks were red. It was because I get red when I exercise, but thanks, I guess.
I knew Im not pretty at all when i heard "I don't like you " from a kid who saw me for the first time. Later I was devastated.
i was wondering why she was sooo pretty
Those kids are so respectful. I feel like every child is innocent. They start judging and doing things they shouldn’t because of their parents and their education.
Or the group of kids they hang around
Cookie Monster yh but those kids are “bad” because of *their* parents education. No one is born a bad person
kids r so great before adults ruin them
naf it's not lik that....With age mind also changes you hate what u used to love n lov wat u used to hate
@@srbhsngh796 yes because you are ALSO strongly influenced by many people around you.
It broke my heart when she said “I’m aware I will die before my parents”. 😭😭
😭😭😭😭😭
That was really heavy. I can't imagine what her parents are going through.
yeah I was be so scared,I'm crying poor thing
Yes.
I'm sorry for her parents..
The fact that she wanted to be a mom but, couldn’t pass the disease on..it just breaks my heart.
Yeah, I have one of the disorders that she listed (EDS). It’s really sad to learn that you won’t ever be able to have kids, especially when you’re only 13 years old, in my case :(
I’m so sorry :(
@@victoriaryle5321 im so sorry about that..
Victoria Ryle I’m so sorry sweetheart ❤️
Victoria Ryle honey i have eds too and depending on which subtype you have, you can have kids, there are just some more precautions ❤️
“There’s no dumb questions”
I love her
no dumb questions*
@@robertvenegas6330 yea
u mean "no dumb questions"
I love how open this channel is
F
This is so horrible she really lost the genetic lottery, so many incurable diseases. Such a lovely, beautiful girl. Life just isn’t fair 😭
And the fact that she cant do anything or even have kids 😪 and at such a young age that she has a chance if dying 😔
yes 😢😢 by 😪😪 putting 😨 emojis ☹️☹️ you can emphasize 🥵🙁your pity 😭😭😤😠🤪
Anyone with physical or mental illnesses has to make dark jokes to cope it's a cruel and sad world
It's unfortunate to think about, but we live life to the fullest the best we can!
With Ehlers Danlos Syndrome, a lot of the conditions are common comorbidities. So POTS and MCAS are pretty much an almost everyone with EDS gets as well.
(Source: me, who has EDS)
"the assumption a lot of doctors will make is that anxiety is the cause of everything"
FACTS
Unfortunately, Drs. Are lazy and want the easiest explanation. I have dysautonomia and was misdiagnosed for many years, so what could have been easily treated has disabled me.
@@michele5695 oh no, sorry 🙏🏽 ❤️❤️
Emma Wolfe those are facts it’s sad that doctors deal with having to tell people their gonna die everyday this girl deserves a sit down with Ellen also Emma ur pretty just like this girl saying that out of my Heart for u and for her please don’t take life for granted be thankful
true but before i got diagnosed with anxiety they tried to tell me i had diseases that caused my anxiety symptoms so it was the opposite for me
People can get too anxious it’s up to the point they feel sick or they end up getting sick. The brain controls the whole body.
I'm not saying this out of sympathy, I genuinely think this,
she is _very_ pretty.
Winter Pheonix she is!!
Honestly she is an amazing person and is beautiful!
She's honestly very beautiful
She is
That right she is very pretty
I can't imagine the psychological trauma of suddenly becoming ill, losing the lifestyle you had before and having to deal with the fact that you will pass away far too early. I hope she finds light and happiness in her day to day life anyway.
I was born with my condition/ chronic illnesses so I feel for her going through the loss of her quality of life. But I have an idea of what she is going through.
Lol my life
@@gwinea3476 stay strong 💞
It is very hard, there is a grieving process the same as losing a loved one. My body started seriously giving up in my early mid 20s and i was forced to stop doing the things i loved. Im lucky in that I never wanted kids because i now will never get the chance. I suffer with similar issues as this person but not as severe and its unlikely to shorten my life, but its a life of constant pain and fatigue that never goes away, and the more i try to do, every day things people take for granted (going shopping, cleaning, even taking a shower), makes it all worse.
@@FaenumVena you sound like me. It's definitely a grieving process. It's good that she's able to get counseling. I probably should look into it too. It's crazy the little things you miss being able to do - like you said showering. I miss being able to clean, too. So freaking difficult to see a mess and have to leave it be because I just don't have the energy for it. I've definitely cried over all the things that I've lost, still have more to go I'm sure.
God bless this girl I pray I pray they find a cure
She’s Vi god won’t help you.
@@lokislittlesister1737 you are sick
Bianca Regano why? Because god isn’t real
everyone has different beliefs
@@shxllua but that wasnt a comment that needed to be said
okay but she's like... REALLY pretty.
She looks like my art teacher
Alex Thomas i don't think anyone asked at all
@@orsemcore right back at u
JDestroy i asked
Yeah.
The kid throwing shade at her dad ".. but my dad forgot to sign me up..." hahahha!!!!!!!!
Stina Ruiz ***her???
@@mak593 what?????????
Stina Ruiz idk, did u mean girl or boy
Yeah that was a girl 😂
OKAY SORRY everyone.. Jesus.
Little Girl: “I’ve never went to the doctor.”
Girl in Wheelchair: 👀
Lyn B Yeah, true!
Pro Vaxxers be shaking
@Lyn B how do you know that she never had it lol
Lainie Picklesimer bro she said she doesn’t go, but only for shots
@Taeyong nope i would know im her sister
[spits in bag]
“No dumb questions”
So badass
she meant there are no dumb questions because the boy said "this is a dumb question"
Manal Qureshi That's exactly what they were talking about
thats not what the original comment was implying
Colosious Composter Uhm, are you sure you we’re watching this? The young boy said “okay, this is a dumb question--“ she spit, and replied “no dumb questions”
RioTT s a m e.
When she said she could die before 25 that made me emotional
She passed like a month ago :/
@@jessicaeliza8290 how do you know?
@@kitkatbar1476 someone said it
@@jessicaeliza8290 on what?
@@kitkatbar1476 look her name up
"The assumption a lot of doctors will make is that anxiety is the cause of everything." GOD isn't this the truth.
Rachel Johnson I know. I have a lot of allergies and the doctor said it was just anxiety. Three years later and in the hospital that doctor should be fired.
IKR like I was saying that my knees are weak and bend backward all the time because she. They bend forward I fall and he was like probably anxiety (this was a substitute my real doc was on vacay) and I was like bish how
People told me my stomach problems were anxiety for years. It’s true, I’m a very anxious person. But that wasn’t anxiety, that was microscopic colitis. Not serious, but still would have rather people look into my symptoms to help me alleviate them instead of being told to take deep breaths
Especially when you're a woman.
"hysteria"
As a teen with a chronic illness, this was very nice to see
Same
Same
Same (except mines not deadly just life long)
same
same!
She is such a beautiful human being, I wish the best for her💕
“it would be not fair to those kids”
me: starts crying
She's right. But it's still very sad.
Her: Do you want to be a mom?
The little girl: yes
Her: I did too
That’s one of the saddest moments to me 😞
Edit: 11k! thank you so much !
When ??
Adinda Prabowo 3:33
Marshay Madden Why did you put a tired/bored/sleepy emoji?
aSean aSean its a snot/crying emoji
Jenny Othelia It’s a snot, but not a crying emoji
“That’d be... not fair to those kids” it’s so sad that people with genetic problems think like that most of the time 😔 I really hope some day someone finds the cure for her condition... this video was so touching.
Theres a robotic brace that moves you if you are disabled but it is over 100,000 dollars. Which sucks becuase we disableds have to pay so Much money just to be human
I also do have a genetic problem for my leg uhm it’s called valgus but on my knee so basically I have dislocated knee
With genetic diseases that have no cure and are lethal it's the only right thing/responsible way to think, unfortunately.
Knowing you're condemned to a very short life because of your genetics has to be one of the most difficult things to deal with, especially compounded with the inability to do things that come easy to most other people - including people with other kinds of disabilities (people who are paralyzed waist down can still ride horses with special seats, etc.).
I wouldn't want to have a kid knowing they'd likely have to go through what I did if I had such a disease. Plus, pregnancy would probably put a huge strain on her already failing body. And the baby may likely not get the ideal nutrients - I don't think bagged liquid nutrients are the perfect replacement for real food in a balanced diet. I've heard it's hard to stay strong on nutrient IV bags.
I have all of those conditions except mitochondrial disease.. I passed them to all three of my Spawn. Watching them deal with the symptoms is heartbreaking, but at least they don't have to wait 50 years for a diagnosis..
I have multiple genetic disorders (Ehlers Danlos Syndrome, POTS, MCAS) and mental health disorders that I have because they run in my family so I don't feel like it would be fair to give those to my children. Luckily, I'm a lesbian so there's a second person who can carry a child in the relationship, AND i want to adopt :')
Julia: “I can’t even swallow my own spit”
Me: *self consciously swallows spit*
Me too 😣
😂
🤣🤣
Omg I’ve never gotten so many likes
I stopped swallowing after she said it😭😭😭😭😂😭😭😭
The way she used past tense for almost everything just broke my heart.
She died :(
:(
her: Do you want to be a mom
girl:Yes
her:I did to
my heart: *Falls down all the way to the floor*
@@sehasapathirana5828 too late, my heart has already fallen down to hell.
*Too
i want to hug her so bad oh my god.. i really hope she’ll have a longer and happier life because she really deserves so much
Exactly what i thought 😭 why do the worst things happen to the nicest people 😭 😭
She really has a beautiful way about her. Just a really nice aura. I wish nothing but the best for her!
Me too she’s such a gorgeous girl and so pure god love her
@@newname5205 Which flowers do you think someone would rather pick? The beautiful ones, or the misshapen or wilted ones?
If you answered the beautiful ones, you just answered your own question.
Also, people who suffered a lot in their life tend to be the nicest people, despite how cynical their outlook on life may be.
Me too but I don’t want her to suffer either :(
Lets tweet about her so that she can meet ellen
Tweet with #hihoellen
Just dm'ed this to Ellen but she'll probably never see this
Omg yess
YESHHHHHH
They need to put a clip on Twitter so Ellen will see!!!
Good idea
I don’t know if anyone ever kept up with her, but she passed away not too long ago. Like a couple weeks ago or maybe even shorter. She did some pretty cool things before she passed away. Rest In Peace sweetheart.
Edit: she died in December actually. I just had heard about it recently so I assumed it was recent
do u know her instagram?
Incorrect she didn’t die in Dec, she died in April.
"Sweetheart"....? Did you know her personally?
@@HipBeeWitch Is it required to know someone in real life to call them sweetheart??
@@daeneryseilish Umm... yes? Obviously.
When she said that she was going to die before 25, it really scared me, and I was shocked because of how young she is
Katia Tannus
I was surprised that it came in at 14/15. That means it could happen to anyone at any time, and I think that was the scariest part of the video to me.
I turn 25 in two days and wow this struck me hard. I just hope and wish this beautiful, wise and strong woman gets to see and experience an amazing amount of years before she passes.
Paula Latorre happy birthday
Happy birthday Paula Latorre!
Dylynn Moore THANK YOUU!! 🤗
i have a cool name! THANK YOUU!!!🤗
Dylynn Moore HAPPY LATE BIRTHDAY!!
i just realized how lucky i am....i feel so bad for this girl
This video really puts things into perspective for some people
Doctor: "You probably have anxiety"
Patient: * is literally unable to walk or breathe without an oxygen tank*
I had a doctor tell me my asthma and mild ruptured esophagus was anxiety. I was coughing up blood. So yeah that's pretty accurate lol
I had a dr that had to rule out anxiety for my GI conditions. Yes anxiety exacerbates them, as anxiety does this for a lot of things besides GI issues, but it's not the root cause of them just because they're milder when I'm not extremely anxious. Like I have mild GAD and my counselor didn't feel it was necessary to send me to a psychiatrist for medications as I can control most of it by talking through it and explaining I can't do xyz at the moment because of it. Sometimes I can do it 30 minutes later, sometimes it's 30 days later.
@@chesterhurley8289 you a rupture esphagus and coughing up blood and the docyor didn't do anything?
Or if you have a diagnosed disability that affects your whole body any complaint you have is sometime automatically attributed to that one diagnosis. But like with Julia, you can most definitely have more than one diagnosis, even if they’re somewhat connected.
school nurses would be like: i c e
I feel like knowing you’re going to die and just waiting for death and trying to live life to the fullest before it happens is one of the worst feelings and psychological horrors ever
Ikr? If I had a terminal illness I would rather not have anyone tell me. Just let me die when I die.
Been Thinking that’s my biggest fear I rather die without knowing
I agree. Although I've heard some people say that it's freeing and I can see why. If I knew I had only a few years to live I'd stop working and look for a way to spend those days not worrying about anything but what's on my bucket list. But that would not be me, I wouldn't find it freeing since I fear being unable to move, being unable to remember my past, stuff like that. I cherish my freedom and my memories. I'd rather be able to think I'll have a nice long life (even if it'll likely not be as long as I'd like it) and never worry about what comes after.
What's funny is that that's life for 100% of humanity. We think only terminally ill people have to deal with that, which probably makes it even worse for them. We're ALL going to die. You might die before they do.
IKR I have that feeling everyday why thought if u was her I would need that therapy to svrvive poor girl
The first 30 seconds I almost cried, she is going to die young and there's nothing to do to prolong her life...
Like they said. Medical scientists are working on a cure so it's possible there will be a cure in the future.
Antoine Louis King I know😭and then the little kids are sAad about it
It made me sad too, except that there is a lot that we can do to prolong her life that has already been done. If it weren't for the oxygen and TPN she would already be dead, and if it weren't for the central line she couldn't get the TPN, and if it weren't for the NG tube and wheelchair she would have a much lower quality of life. I agree that there is more room to grow and would love to cure some of those conditions, but we need to also focus on making sure that the treatments we do have are being made available to all the people that need them (which it currently isn't).
@@LeonidasSthlm the important thing to remember tho is that every disease has scientists behind it trying to work on it. Mito is at the bottom of the list thought because it is so rare. Conditions like cancer and Alzheimers get more funding and attention because they are much more common. It's very possible for all diseases cures won't come for a very long time. The only reason I say all this is so people see that these foundations need donations and awareness, and people don't think a cure is just around the corner.
Imagine having so much diseases that you can't even remember all of them
stan wekimeki I have EDS, POTS and mass activation and some others. Yeh I don’t remember them but i think it’s mostly bc I try not to think about it. Like sure I gotta a tube in my chest and stomach but I don’t really want to let it affect me
I have a lot but I just wanna got block it out
Amanda Newman Exactly, I have EDS too and most of us have a handful of comorbid conditions. I have suspected POTS, adrenal insufficiency, IBS, vocal chord dysfunction, PCOS... that’s all stemming from EDS! It really sucks.
Tbh it gets confusing when doctors start contradicting each other. Like she mentioned, a lot see anxiety as the #1 excuse.
@@heidibullock1853 Why are they thinking at the start that it's "just" anxiety anyway? What are the early symptoms besides I assume, feeling weakness (which can be a lot of things anyway, not just emotional stuff)? Anyway, that's very lazy of the doctors to assume anxiety. Anxiety is a serious issue and needs treatment/environmental changes, etc. but such assumptions by doctors even today are used as an excuse to do nothing medically about it because the doctors aren't sure. If they can't find a cause they need to dig deeper for rarer diseases 1st and then treat the anxiety if that's what it truly is.
Julia sadly passed away this past weekend. Rest In Peace, Julia💜
where does this news come from?
@@Reproductions93 Mutual friends.
And I apologize I heard it was in December when I responded too many people that's what somebody told me and I'm sorry to say that I was wrong but I feel very badly for her parents in my heart truly goes out to them and I know Julia is in heaven no longer in pain or sickness
This girl in the video
She didn't make it to 24, did she?
And the award for most unfitting music goes to...
Yea, I thought so too. 😑
haahhahaahahha
@Brianna Andreacci i
Molly Smith lol
@@Molly-eo2rd is it okay if i laugh :(((
I just realized that her voice is raspy because it's probably dry cuz she can't swallow or drink anything
also probably cuz her lungs are failing
@@Heedy770 yeah
Bro it’s because her lungs collApsed
@@laceyharless5203 Ikkk I'm no doctor but it really sounds like her throat is dry cause there is no kind of liquid
emma ward yeah its probably a mix of everything ya know
I hope her dream to meet Ellen comes true 💞💞💞💞
stay strong girl 💞💞💞
Edit : let's tweet and DM Ellen!! show to the girl that we love her 😁😊😊
yeah
Same
Who's Ellen?
@@theresa5059 Ellen Degeneres, her show has been inviting a lot of inspiring person and people around the world. She supports all of kind activities, gives student money to pay their loan, surprise people with gift, and many other thing. In 2016, she received medal of freedom from President Obama.
She inspire bunch of people to not give up on their recent condition.
#cmiiw
@@theresa5059 Ellen DeGeneres (TheEllenShow)
(coming from someone who also has ehlers danlos syndrome, pots, etc and is on tpn) this is absolutely amazing and i hope to see more content like this. sending endless love and prayers to julia and her family.
danielle frick Hellllooo fellow zebra & potsie!! I have EDS, POTS & MCAS as well❤️
We need to get Ellen’s attention so she can have this sweet girl on her show...
YES.
Yes. Love a bit of exploiting dying weans for views
@@ewanw5654 what
Ewan H No... she said she *wanted* to meet Ellen
@@ewanw5654 she wanted to meet ellen 🤦♀️
"A lot of Drs think that anxiety causes everything"
YES. WHY. UGH??? It took me so long to be diagnosed!!
Same but they just said “It’s only growth pains, they won’t last forever” *THEY SAID THAT WHEN I WAS 6-7 YEARS OLD IM 12*
@@alexsucks2411 you're still growing lolollol 😂
@@alexsucks2411 ur still growing when ur 12.
I'm feeling a lot of growing pains at least I think. It's probably because I'm short and I'm getting tall
I stopped growing at 12 (I was a tall kiddo...5ft at age 8...) and when doctors could no longer dismiss my body pains as growing pains, they moved on to "must be anxiety" or "you're just an emotional teenage girl looking for attention." I didn't get properly diagnosed with anything until at least age 15, and the most critical of those disorders weren't diagnosed until I was 22 and 23. Some doctors are idiots. No, anxiety did not cause my shoulder to dislocate 16 times this week, and anxiety did not cause the collapse and pronation of my hips, knees, and ankles.
Oh I could just cry for JOY right now... that probably sounds odd, but I have all the same things this girl has. I am 28 now though. To see it on a bigger platform gives me hope. So much. Ehlers-Danlos Syndrome is something you are born with and it is often the catalyst for a list of disorders that this sweet girl and I have. Most of these are vastly misunderstood and we are often treated terribly by medical professionals. WE NEED AWARENESS, FUNDING, AND RESEARCH AND WE NEED IT NOW. I refuse to continue sugarcoating the fact that these disorders cause mass amounts of suffering. So when you can't even at least get approval for a wheelchair or pricey meds (let alone bigger things like a caregiver, electric wheelchair, treatments, procedures, etc.) it is infuriating, invalidating, and just plain hurtful. For example, we shouldn't ever have sit in an ER rolling in pain while the dr rolls their eyes and goes to google your disorder(s) only to come in and announce that you don't get any pain meds and you just need to calm down and go home. If you think it doesn't happen, ask any one of us. Something has to change before we lose anymore to not only just these issues, but also to suicide because they just can't handle the pain anymore. No more. No more sugarcoating.
HUGE thank you to Cut/HiHo Kids for doing this. It helps more than you know ❤
Wish you the best♥
Happens to a lot of different issues. It’s also often very hard to know which one is the starter and what you already have when they are so many.
I feel the exact same way!! I've been hoping they'd do one of these to help bring awareness to conditions like EDS ad mitochondrial disease. My medical conditions have taken so much from me, and there's so much misunderstanding about them, so I am very very happy they did this
So Mitochondrial Disease is actually the catalyst for the vast amount of her severe systems and organ failure. There is a huge difference in terms of severity.. unless you have a bad case of Vascular EDS. The vast majority of those with EDS have a normal lifespan.. Julia is active in the Mito community and we both have the same mutation and disease progression. (i use an electric wheelchair, use oxygen and am on TPN with a small amount of tube feeding, just got out of a 4 month hospitalization) Almost all the young girls who have Mitochondrial disease get diagnosed with Ehlers-Danlos Syndrome at some point in their diagnostic process.Most specialists agree that it's mainly because very early in their disease progression Mitochondrial Disease can resemble a very severe case of EDS and the hyper awarness of the disease and it's loose diagnostic criteria has gotten by the medical sphere over the last 5 years. I was diagnosed with Ehlers Danlos syndrome type 3 after I had a stroke 4 years ago. I was active in the EDS community Though on average I was extremly sick in comparison to the average EDS patient, people in the community would se me as a "Look how bad my EDS could get". It's heartbreaking to be honest. Many members of my mother family died before they even finshed grade school. As I started going from organ dysfunction to organ failure (theres a huge difference there, It became increasingly clear that the likelyhood that it was exclusivly EDS was low. Testing brought back the results of Mitochondrial Disease I couldnt believe that it wasnt pure EDS. At that point my disease progressed heavily and while there is no straight forward treatment, focusing on pallative care and agressive treatment during surgery, ICU stays, nutrition, and sepsis can make a difference in how far those events are progressing your disease. For many Mito patients dont get that treatment until it's too late and you cant get that function back.
As much as being undiagnosed sucks, We can't even do proper research to figure out why true EDS 3 patients have the illness (when all the others have a recognized genetic basis.)or to look for treatment. It's unfair to *everyone*in the community to have such an undefined illness. People who mainly have dysautonomia and hypermobility shouldnt have to think the could die from type 3 EDS, and it's' just as unfair for the patients that have such severe symptoms and get fixated on this stuff. I usually know 2-4 people who die of mito each month. a figurehead for how severe EDS could hypothetically be. Its heart breaking seeing people who have so much freedom and ability to focusing on those things (It's not their fault its an illness community thing). I
PSA-if you get rapid progression of your illness or have significant muscle weakness (not fatigue or deconditioning) talk about it with your geneticist.
i have EDS and it’s so frustrating to bring it up to my doctors and 3/4 of them admit they don’t even know what it is..
As someone with a genetic heart condition, it really resonated with me when she said "It would not be fair to those kids." I only have one major disease and it is nowhere near as traumatic or life-altering as everything she has gone through, but I still stay awake at night thinking about if I would be able to live with myself if any future children I have went through all the testing, doctor's visits, and life-altering adaptations that I went through. She is so strong and amazing to smile because I know that somedays make it incredibly difficult.
When the boy said, "I love eating!" And she says "me too" but she can't eat for rest of her life.... That broke my heart in millions of pieces!! Oh God why so cruel 😢😢
Especially on a channel where kids try new and exciting foods.
@stay weird or die normal wait so you believe In God and reincarnation? What religion do you follow my dude I'm genuinely curious
very cmolty ikr im christian and i’m confused af
@@vek5027 stay weird has no clue what he's on about. God is 3 in 1. Jesus=he God=he(but not human) holy spirit=it/representation.
She might not start a family
She might not be “Normal”
She might not go to prom
She might not get cured
But she will and did put a smile on everyone’s face💞
❤
She’s 19 so I think prom is out of the question now
Girl: I've never seen a doctor
Me: Oh no, she's unvaccinated-
Girl: Only for shots
*Rush of relief*
I thought the same thing😭
Dude I thought she said “not even for shots” and then I felt like an awkward silence lol
And that's why she's never seen a doctor 😉
@@gabriela-yl8bx good one
She would use essential oils duhhh
Swimming, shopping, capabilities...she lost her way of life at 15. I just turned 15 and I share so many interests with her - I can’t even imagine what that would be like :((
Omg we need Ellen DeGeneres this is so heart warming
YESSSSS~
#hihoellen other people started to tweet this for her so yea.
hannah logan YASSS THATS AWESOME THX FOR THE UPDATE
Try to send Ellen this youtube link :). I Tried, but I am awful at technology. see my comment above for Ellen's website!
Omg let's share this on twitter so that Ellen can she her
#TheEllenShow
Ellen, please reach out to this young woman!
Petition:
V
199th like :3
Signed
#TheEllenShow
#TheEllenShow
#TheEllenShow
ill Teen: I Might Die Before I Even Reach 25
Kids: *Surprised Pikachu But With Tears*
Not funny, sorry
@@lyy4227 right...
@@lyy4227 You say not funny, but I have mitochondrial disease just like the teen in the video and think this is hilarious. Able-bodied people are so careful about everything. But if you've ever met someone who have chronic illness, you soon learn that we can have a pretty dark sense of humor. Lol. Yeah, I'll probably die before the age of 25, but that's just how it works for us. my other friends who have mito and I make jokes about dying all the time. Laughing about it makes us feel better about our fates. It normalizes it.
My friend: *coughs*
Me: "You okay?"
Friend: "Yeah, just dying a little faster than normal"
LOL
Chronically Catholic oh I never knew that, I just thought that making jokes about someone dying is rude
@@mikaelacash3791 omg 😂😂😂 that is hilerious but still kinda sad i wish you all the best ❤
we need to get her on ellen
I actually just saw a video where she has met Ellen.
SHE MET HER IM SO HAPPY
What are you doing here?
She recently meet Ellen on FaceTime, and got to see her in person as well. Ellen also let her FaceTime some of her favorite singers too.
@@amandab.1580 yeah its beautiful, but the comment section is closed, I hate that
“This is my meal”
Kid: ‘looks like breast milk’
Had me dying 😂😂😂
Prob kinda simular to it. Has for sure a lot of proteins in it.
Not even just normal milk, breast milk
I havent even gotten to that part and i was already laughing at the comment
7:03 *you have a nice face*
I LOVE KIDSSSSSSSS
Can I get 1000 Subs with no videos? -_-
@@kitoffour5783 stfu kid you don't even know how to spell it
XD
Can I get 1000 Subs with no videos? I’m in for dark humor, but only funny dark humor
The music really doesn't fit the video
Don't ruin it. The girl will see this video. I think she doesn't want another sad think on her memories to paradise
Elissavet Argiriou that doesn’t mean it fits bc the vibe was different and the music was way more happy and carefree than the message sent
Bro i thought the same thing... If anything i think its a bit disrespectful but idk
I personally have Ehlers Danlose Syndrome and POTS and it’s so easy to wonder why my life is so difficult but it’s humbling to remember I don’t have it like others. I once met a woman with multiple types of EDS and she had the same feeding system but her favourite hobby was cooking. It’s crazy to think that the people around us can live in the same situation yet so differently at the same time. It’s amazing to see how brave she is about it!
Boy: OK this is a dumb question
Girl: *Spits in bag* while kids stared
Also Girl:No dumb questions
I died🤣🤣
Amanda Lawrence 😂😂😂
She meant there are no dumb questions.
🤣🤣
Starree?
I closed my eyes and took a deep breath i really didnt want to laugh but now i can know other people did im slightly relieved but still kinda annoyed w myself no offense
I kinda cried when she said she was likely going to die before 25
I think schools should have days like this so that way kids can learn about different people. I love this channel.
Chris LeDoux that is an amazing idea
Chris LeDoux definitely!
Chris LeDoux that would be so amazing but knowing the kids at my school i would get so scared they’d ask really offensive questions
we did this at my school. It was mainly people with disabilities but there were a few people with hereditary illnesses and disorders too
@@daisee12 how did it work out
Girl: I’ve never been to a doctor
Everyone in the room: shook
She said she only go's for shots
One of her parents is a doctor, and she says she goes for shots.
As a teen who also has chronic illnesses, a few of the same ones that she has, this was amazing to watch the kids interact with her and hear their questions. Great video. :)
@@callum__w I have Chronic illnesses and some days I can just be a normal kid with pain. I also have days when I the pain is so bad that I can't even leave my bed. I looked at her channel and she must have filmed those on a particularly good day. Also, alot of chronic illnesses are invisible. Some days I can walk around a little while others I'm in my wheelchair.
Chiari Warrior I wasn’t sure because if they were lying then it’s not something you should lie about
@@callum__w I totally understand where your coming from. I wasn't trying to sound like I was mad. I agree with you that it is very mean to the people with chronic illness when people lie about having it.
Chiari Warrior ok 👌
Callum Wittenbrink She has two videos? How in the world would you be able to tell from two videos?
“ you have a nice face” I’m wheezing 🤣
Elexis Ankrom ik i was dying when she said that🤣🤣
That was so cute!!
Cutest thing ever
I really wish they could do another video off completing her ticket list or most if it 😫
cas ellennn
*Bucket list
Julia has passed away over the past few years. It is SO sad, but at least one of her bucket list things came true, she met Elle. May she rest in peace
so like.. we gonna talk about that little girl at the ending staring at her for 2 seconds then going "you have a nice face" 😂 i wheezed
Her parents have probably taught her to give people compliments as a social formality. And she probably couldn't think of anything that wasn't medical related or sounded somewhat mean. In my lifetime, I've had people awkwardly tell me that I have cute feet or kind eyes for the same reasons. I'll tell them I like their dress, and they look me up and down trying to figure out a reciprocal compliment but only see crutches and a service dog, so they talk about my feet, my hair, or my face. Every. Single. Time. The polar ends of our bodies are the least likely to have a physical health problem that they could accidentally insult us over. And many times, physically disabled people don't have on trendy clothes to compliment...we wear what is comfortable and easy to put on/take off, like sweatpants or leggings.
IMPORTANT! ~ she said that she would love to be able to ride and connect with horses, now i'm not sure about america but in england there's a charity called RDA( riding for the disabled association ) that have both horses and people trained to the level of understanding and care and also machines to help lift and move people so they are able to sit on the horses. an amazing charity and i really hope there's one over seas that she can get in touch with really worth the while!
We neeeed to get her 2 see this!!!!
This is so important! I’m a massive horse lover and they can definitely have a great impact on mental health, and the RDA is an amazing charity!
There is a version of the RDA in North America called the North American Handicapped Riding Association, or NARHA for short. they are supposedly found in both the USA and Canada(I haven't really check forlocations), my best guess is they have at least one location in the Southwest.
There are various riding groups like that in every state. Quarters and other large breeds are used for clients like her with chairs and heavy equipment
I would love to be her friend, she seems so friendly and fun to talk with.
hetbet you also seem like a disrespectful kid who wasn’t raised correctly
hetbet stop
@@hetbet3879 y r u here anyway??
@@hetbet3879 who hurt you?
@@ignivite3592 Everyone.
Rest In Peace Julia 😭💕🕊
IS SHE DEAD?!?!
@@leedancesataldc5094 yes unfortunately
Girl: explains how she basically cannot do anything
background music: dOo Doo doo dOo
edit: tysm for the likes btw :)
but i still feel bad for the girl..
Peachy Wave sTOP🤣
😂😂💀💀💀💀
Do likes make you feel good? Weird lol
my humour has decreased to an all time low
I don't think that you should pity her. If I were sick with an incurable illness the last thing I would want from anyone is pity
Bless Julia. Bless those kids for being so respectful to her.
Petition to get this girl on ellen
👇🏼
How do we get in touch with these celebs? any star power seeing this. Shes so upbeat, even though.
Kamiel Moodley dms
@@kamielmoodley3689 Twitter?
👌
@@kamielmoodley3689 There should be a place to petition this girl on Ellens website...That's how Oprah is at least.
I’m also a teen with ehlers danlos syndrome. We think i also have POTs and MCAS but it’s such a struggle With the doctors and I’m only 15 currently. To see someone like this spreading information I’m really grateful, but I feel really bad that she was in this position, I’ve just seen she’s passed away. Rest in peace
I was told to be borderline ehlers danlos syndrome when I was 13, I'm currently 17 and hopefully I will get a full diagnosis soon. I'm suspected to be autistic and I have had CDH, and asthma along with one functioning lung
Okay, I cried.. what a beautiful and humbling video. She is phenomenal. I hope she gets to accomplish her entire bucket list. If I were to have another baby, I wouldn't hesitate to let her be a part of the birth. Also, I hope Ellen sees this!!!!
I really feel for this girl. I also have POTS and can definitely relate to the “standing up and dropping to the floor” part :(
It’s good seeing children able to ask questions and become educated on medical conditions they probably didn’t know about before.
I kinda fell in love with her. She is so beautiful... inside and outside. I just cant... I hope she can live her life to the fullest.
You literally stole the words I just spoke 😭
Well she just met Ellen, so her dream come true! She is in Hospice now though.
shes strong. Makes you realize that your problems could always be worse so you should be grateful for what. u have
I feel this so much.. I’m chronically ill, and I’ve had everything she’s had at one point. It’s, uhm.. tough. But you manage.
Just got out of the E.R for a heart attack and almost a stroke.
Best luck my spoonie buds.
OMFG HOPE U ARE OK
Bethany Minar love u fellow spoonie 🥄💕
wishing you all the spoons, my fellow spoonies
Hello fellow spoonie
🥄💝
I hope that little girl is mistaken and has been to the doctor and is vaccinated.
She has been vaccinated, says so herself. "I've never been to the doctor, only got like shots" (in the subtitles). It's a bit confusing, but she just wants to say that she's never been to a doctor due to illness.
anti vaxx mommy
Oh lawd
@@jaydensickle9695 Read the f**king captions as the respondent above said.
@@Ihdc1 Do you have to swear at everyone to get your point across? Grow up.
She reminded me so much of Claire Windland. 😭💗
Me too!
*Wineland
Yes. Her voice reminds me of her! I was first guessing she had CF and muscular dysthrophy.
WhO?
pizzalizza 18 Claire Wineland! Amazingly beautiful girl in every way possible... She died a few months ago, but touched so many with her openness and her beauty. She will never be forgotten.
@@derfranz5770 oh ty
She seems really nice like, she would be the best friend that was really understanding no matter what
Get her to meet Ellen !!
Yes! People there be like ->
7:04
Why exactly?
@@acaustic
.y
,.
Yes
Tofi because that’s her dream (she said it at the end of the vidéo)
Omg that’s so terrible I feel so bad for her. 😭 15 thats so young!!! The look on those kids faces when she said she will probably die before 25 😭😭😭😢
Random Channel I think she’s 19 because it says that four years ago when she was 15 she was diagnosed
I was diagnosed with my illnesses at 13 and trust me the best thing you can do is be informed!
Madison Hylland I was diagnosed with a chronic illness two months ago but I’ve had it for a year and a half
@@jessyhayward9544 If you don't mind me asking, which chronic illness?
Random Channel getting diagnosed as young as possible is the best thing that can happen because for some of the illnesses that she has there is some preventive care you can use but it’s really hard. I was diagnosed two days after I turned 13 and I’m 15 now
i have some of the same conditions that she does, and i also got sick around 15. it means a lot that more awareness is being brought to these rare/unknown chronic illnesses.
Hannah Coleman I have some of the same ones to, but not as bad as her.
Hannah Coleman I’m so sorry. I would like to do something for you but I don’t know what. I’m just 11. Maybe we could be TH-cam friends. If you like music you could help me pick my next song to record. What do you think? 🙋🏻♂️
Take care all of you and stay positive 🙂
I have pots too and was just diagnosed recently, I’m here if u need anything! ❤️
Trinity Paquin aw ty. i got diagnosed just over a year ago. i hate hate hate pots but i’m thankful that i did get diagnosed (eventually) instead of my symptoms just being passed off as anxiety like they were for awhile.
This really made me cry. It’s so lovely to see how she is so positive about it. I really hope she lives to become a mum❤️🌸
Let's help Julia to meet Ellen
Tag Ellen in the comments
👇👇👇
#TheEllenShow
#TheEllenShow
#theEllenShow
#TheEllenShow
#TheEllenShow
#TheEllenShow
SOMEBODY PLS GET HER TO MEET ELLEN!!!!!
#TheEllenShow
#TheEllenShow
#TheEllenShow
#TheEllenShow
#TheEllenShow
I have a few of her disabilities, eds and pots. They effect me differently and most of the time i don't look disabled but there are times i can't walk or even stand. Im very glad Julia could be in this video and educate people about her disabilities.
I relate I have EDs, asthma. One functioning lung, CDH and some days I'm in so much pain my legs won't functioning properly but I'm only 17, so I try not to "look disabled" because I'm so young and I don't want to look the odd one out
Kinda weird that my names Julia and I also have EDS and POTS. I also got sick at 14 and have missed out on all the teenage things. I’ve been waiting for an episode like this. I’m very glad that they made this video. The kids are so kind and understanding. So glad they brought this to light.
I have endometriosis and was diagnosed at 13. I understand so well!
B I know but as far as fatigue and being a teenager with chronic illness I can understand not being like other kids
B I have something kinda similar but I forget what it’s called. That’s brain fog for you 🤷♀️
I have POTS too, it's impossible to even get out of bed some days. Hang in there ❤
I have POTS as well. I got sick when I was nine, and it's been 10 years now. It's interesting that I never hear about it outside of these little corners of the internet, but I am finding more and more people with it. I'm also glad this video was made because although I can function and am in a much better condition than the girl in the video, I've also missed out on so much of the "teenage experience", and having a chronic illness can be so draining. I'm glad they were exposed to an illness that doesn't go away.
As a teen with POTS I really am glad you guys do this
You can tell that she has a good heart but it breaks my heart to see her like this...I’ll keep her in my prayers.😢❤️
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
They way she says bye in the end melts my heart... :(look at that smile 7:17
This made me cry T_T
She's so brave T_T
God bless her. I wish her well and a happy rest of her life. Those kids are so respectful and kind. 💜💖
Every journey must have an end. I'm sorry Julia's had to end too early. RIP Julia. I hope to meet her one day in heaven, riding horses across the clouds
Is she dead now omg
@@belleangel8612 yes, she died in April. Rip🙏😞
Wow. That really moved me. Young people are often so kind and intuitive. I'm sending love to you, Julia, and I wish you a beautiful life with an ever growing bucket list. ❤️
kid: I've never seen a doctor
me: 👀👀👀 wai-
kid: Except for the shots i got
me: oooh there you go
and they were ROOMMATES same! 😂😭
and they were ROOMMATES oh my got they were roommates
and they were ROOMMATES
Pretty sure she said
“Yeah ive never gone to the doctor and like got like shots”
They had us the first half, I'm not gonna lie
and they were ROOMMATES I LIVE FOR YOUR USERNAME!!!!! 💀💀💀
when she said that doctors often think that anxiety is the cause to everything i relate so much. i dont have it nearly as bad as her but i have chronic sinusitis which was undiagnosed for almost a year because they were sure i was faking it
Producer: " do you want this video to make people feel Inspired or sad?"
Julie: " yes"
Disabled people don't want your pity or to be inspiration porn. We're just people.