8-Year-Old Girl Battling A Rare Brain Disease She Calls ‘Awesome’ | TODAY
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- Опубликовано: 27 авг 2024
- When Ellie McGinn was only 3, her parents started noticing she had issues with balance. After many tests, she was diagnosed with a rare disease that’s hard to pronounce: leukoencephalopathy with brainstem and spinal cord involvement and lactate elevation. Kathie Lee and Hoda share the brave young girl’s story (and reveal how you can help).
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8-Year-Old Girl Battling A Rare Brain Disease She Calls ‘Awesome’ | TODAY
"boys get this disease too"...... I love this girl.
DutchDread omg me too
YESS
I know right?! Everything is always about girls and for girls etc. Don’t believe me, go to any department store and try to find cute boys clothes and outfits. Nope. They’re just like an afterthought - a few super hero t shirts and sweat pants shoved in the back and yet countless selections for girls. Yeah I’m a proud boy mom! 👊🏻
same
Me too, she isn’t a feminist who just cares about girls who get it.
*"If we got rid of my Condition I wouldn't be myself"*
Maybe I cried. 😢
@Madison and Leah no u 😭😭😭😭
maybe i did too
I know I did shed some tears. Also, when she said that I was like...whoa, she is sooo grounded and so mature about her situation.
None of you cried 😑
it's okay, i cried too and way before this part of the video =[ her innocence and compassion, her empathy and love of herself are all so moving
Doctor: You have rare disease.
Ellie: How rare?
Doctor: You get to name it.
• creampop • I would love to name something
that is mean to make fun of her disease
Nola Gamer2008 i- its not mean
i commented this n forgot all about this adhdhdhd
Most wholesome things
“Tough to pronounce but not nearly as tough as this little girl is.”
Ikr I didn’t know if I should laugh
Not at all tough to pronounce, I can spell it without cheating
Leukoencephalopathy
period. harry styles. love your pfp lol
I see harry
True tho! Love ur pf Harry's my favorite!! ❤
Update: as of March 2021, ellie is still alive, and her family has raised over 400k dollars for research.
When I read "Update", I panicked. Glad it's good news!
@@Syngrafer haha, sorry if I scared you! I am too! She is so brave and I wish her the best
@@maddy1847_fly No worries, I'm just glad my initial fear was wrong! :D
Thank you, I was literally scrolling through the comments to find an update.
Where did you get this information?
This girl is a very strong child, so are her parents. I wish the best for her
Thattrashcan her and her parents goid luck and stay strong
Isn’t she so adorable. 💕😊
theaisarat i
phanedits You want to call her brave , I would say that she might be a bit on the crazy side. Anybody that name is a disease awesome disease has issues. You’re giving false hope to children telling them they have an awesome disease that is going to make them possibly be in a wheelchair and die at an early age and not thrive like other children. You can think she’s awesome all you want I disagree...I think that she’s gonna look back and go wow that was stupid maybe not though
+DD Bears
No no no shes saying shes brave because of how she is speaking of it publicly not ANY of the horrible things u said
Imagine getting that diagnoses...
“Sir, we have your test results back. I regret to inform you....*long pause*
You have..awesome disease”
“Excuse me?”
To add to this there’s a gene called “Sonic Hedgehog Gene” in the human body which can have mutations which causes damaging genetic disorders.
So somewhere a doctor will have had to inform someone that their loved one has a problem with their Sonic Hedgehog Gene, and it’s manufacturing of the Sonic Hedgehog Protein.
That’s awesome!
Lol, I would probably ask if that was supposed to be some kind of pick-up line. If we're talking about a diagnosis in adulthood, anyway.
😂 😂 😂
Miracle Formula breakthrough created by Doctor!
supermemoryprogram.com/?hop=sutanle to
Okay but isn't anyone gonna inform how beautiful she is
you did
@@spec_wasted Lmao 💀
Because beauty is relevant here... 👎🏻
Uh 911?
Fbi open up
SHE'S SO FREAKING CUTE!!! What a champion.... ❤
Elizabeth Cartagena ikr
Elizabeth Cartagena I know she's so cute
Fuken lier
cinnamon gaming Bruh you ain't right.
Praise Be To YAH and His SON you know the name of YAH too?
😢😢😢 Ellie you're such an inspiration to everybody of all ages.
BeautyFanatic27 no she is not
Liv Cabrera yes she is
Goosebumps down the back of my neck... so amazing!
Seriously??? How do you ever count to 667?
J Co Haha. I don't
What Eli said at the end, that she didn't want to cure her own disease because then she wouldn't be herself, is really fascinating. At such a young age, she is able to forge meaning from her condition, and build an identity with it as a positive part of herself.
Or it's because it helps her get attention, that she should be getting for her qualities instead.
@@Trip_maniaor because she just simply don't want to go through such a large life change like a lot of other disabled people because of how hard and long it can take to adapt from their way of life with their disability that they had for as long as they remember to their new, completely different life without said disability, which they won't ever get used to at all is some cases??
@@Trip_mania Why are you projecting your wishes of fame onto a child for attention LOL.
This girl is so positive, smart and strong
@Shispirina Yes, I agree. I think that being so young and innocent gives her the luxury of not knowing too much about her prognosis or at least have the ability to filter out some of the knowledge she has gained. I'm sure she knows a lot more about it than I do. But on the other hand, it comes back to the fact that no child should have to go through what she is dealing with. I can see you're only trying to see the positive side though. Let's hope they find a cure for her and her fellow awesome patients.
agreed!
she is sooo smart!! But she's only 8?! This kid is amazing
@little bee. you mean awesome
@@egallagher4185 both
@@pancake_127 edgy
@@pancake_127 they're adding on to the compliment
I’m your 666 like
What a beautiful and brave little girl. She’s an inspiration ❤️
Almost 900 likes but no comments..
true lmao
She is not a little girl. I am 8 years old. I am a big boy. So she is a big girl.
@@kevinpark55 Ok, go play mud
"What disease do you have?"
Oh, I have "The awsome disease".
"Cool! And what does that stand for-?"
It stands for leukoencephalopathybrainstermpinalcordinvolvementlacateelevation disease. No big deal.
It's not all one word. 🤣🤣
🤣
Omg I just checked in this an it has 468 likes.
@@query4634 808 now o_o
@@darkprotoboy 853
She’s still doing great today. She’s one of my good friends. She is amazing!
Really?! Awwee she's really a warrior ❤️
like you know her personally?
Yeah, she is doing amazing!
@@safm986 excuse me if you have nothing better to say shut up and say nothing.
Amazing! I hope that is still the same today. I have an acquired brain injury from an accident. Although different I understand when they said the Drs. Thought she was just being funny. I'm so glad they found a Dr. To investigate & help. I've had to do a ton of research & healing on my own b/c the Drs didn't seem to have any answers on my constant falling. Blessings and love to the whole family but especially Ellie 💝
She's beautiful
Claire Patterson iI
Maryam A what??😂😂😂 How is this relevant.
Maryam A
Idk what children you've been around, but that certainly hasn't been the case from what I've seen.
Plus, there are plenty of cute/ pretty kids of different skin colors.
I've seen better
had to make the 700 likes come true
When I was like 2, I couldn’t even roll over. I had a sort of muscle disability and I wasn’t strong enough. Soon enough, no one thought I couldnt move for the rest of my life, so I needed a wheelchair. Then my doctor made me an ankle thing and my parents called me “miracle”. whenever I have a bad day, i just remember that one day people everywhere tried hard to help me and that somehow i am a miracle
fair chair I learned to talk and walk late I have dyspraxia but it’s like wayyyyy less than when I was younger. When I was 6 I was diagnosed with I think 4 different things lol
fair chair is that y its ur name
Wolf Pup OML I DIDNT NOTICE THAT 😂😂
awww fair chair...even ur name...xD
The fact you exist is a miracle 🙏
Gets disease
Girl: I see this as an absolute win.
*ellie is like really pretty*
For reallll
How old are you?
@@SwaypenYT you can call someone pretty and have no intent of any sort
@@whoopwhoop9339 THANK you ✊
@Hi person reading this Get your mind out of the gutter there Is nothing sus about calling someone pretty
As a blind disability rights activist, I'm proud to say that she will be the revolutionary of the future! She is already expressing such pride in her identity. Hopefully, she learns of the social model of disability and curb-cut phenomenon soon!
Rilee I
Rilee how are you able to right.?????
well the original commenter can WRITE better than you...
Rilee if ur blind how can u write?
Gabriela Cruz there are computer programs and hardware that are for blind people. There are Braille key boards, they could have spoken our their comment aloud and it was heard by the computer and typed out.
she’s such a sweetheart, she doesn’t deserve this :(
I kinda hate it when people talk about anybody "deserving" anything as if Life is all about what we do and don't "deserve" I've went to
Hospital/s for a Couple of Years in a row to get Medical Treatment and my Mom Traveled Abroad for like 3 years in a row to also get Medical Treatment and what not what does any of that has got to do with anyone "deserving" anything?😑😒
@trust me
she WANTS to be like this okay?
I agree
i don't think there is a single child who does
@@monabohamad2242 yup 100 agree, or people who thinks you are a puppy or not human, those people are worse than disease or conditions. I have accepted my adhd and I don't see it as disorder just someone who has a little of challenges over somethings.
Imagine saying "I have the awesome disease" and your friends are just put in a very awkward situation whether they don't know if they wanna laugh or cry
This is such an adorable girl with a huge personality.. love her absolute positivity despite the hard times she has to face.. it is truly admirable.. but i have to point out something that rubbed me a bit wrongly.. when they asked her if she would want to be cured and she answered 'I would like to get rid of the medicine but not the disorder because I wouldn't be who i am without it..' .. it made me feel as though she feels her identity is her disorder and that without it she wouldn't be her.. I feel this is a little bit sad.. maybe through trying so hard to be positive and getting attention by being the girl with the 'awesome disease', maybe it was in a way engraved in her that all there is to her is this disorder and that's the only thing that makes her special so she doesn't want it to be gone.. I think it would be nicer if she detached herself from this disorder and put worth on every other amazing quality that she has, because with or without this disease she is still her and she is truly adorable and precious... I hope it is just my misunderstanding of the wording of her answer and this is not truly how she feels because that would be sad..
i was wondering exactly the same as you, but couldn't have phrased it as well and as kindly as you. thank you!
I was thinking that as well, nicely put.
If she hadn't had the disease, she would have had different life experiences and would not be the same person she is now. Your experiences change you, for better or for worse, but they change you. I don't think she was claiming it makes her "special"--just that it cannot be entirely separated from her without changing who she is.
In my experience, I feel better about the conditions I've embraced. Trying to detach them from myself makes me hate having the conditions, which makes me less satisfied with my life.
@@kaiatheodore The thing is, she was asked if she would want it to go away and she said no because she wouldn't be herself, but she can die having this disease so that was quite shocking to hear. I can understand in the past you wouldn't want to change it, but something that gets worse over time and possibly deadly in the future?
Too much text ow my brain
She really is awesome
yes we get she has awesome disease? Your point is..? (its a joke... because the name....of the disease.... is....awesome....)
She's brave and awesome stay brave!!!
Ellie is still with us as there was a video posted on her channel. The disease has progressed, but she is still here! 🕊🌸
Very glad she’s doing okay. It looks like she’s walking the same as here? how has the disease progressed?
What's her channel name?
How is Ellie doing now is she doing OK?
This girl is so strong and I hope she's getting better everyday. Bless her 💞
She's magnificent, what a lovely little lady, my prayers are certainly with her, I hope she recovers well, she's absolutely adorable, it breaks my heart to see children go through such rough times! 💕 PS: You're truly awesome honey, keep up the good fight, you inspire all of us!
yea it's hard for those lil angel's ..
these run-on sentences are getting on my nerves
she's just an amazing human being. Wow
I'm not sure if she's really brave or of just too young to understand the implications of her condition. I really hope she gets enough time to find an adequate, life improving treatment.
Exactly. Leukoencephalopathy, and related conditions such as Leukodystrophy, take tolls which nobody would ever wish on themselves could they fully understand them.
@@NicoleCzarnecki
She's probably dead by now
@@MangoTroubles-007, how absolutely comforting for her parents to possibly read 🙄 😠!
She is such a pretty and sweet girl.
Sending my prayers to her. 😢💞
“Seven, eight, nine, ten, kaput!” Such a sweet cinnamon bun!!!! 😭☺️💖😍
This little girl is such a beautiful human being😭❤️ She doesn’t deserve any of this, she is such an innocent child❤️ May god bless her and her family🙏❤️❤️
If you believe in god, I guess He has already blessed her. With a horrible medical condition that will see her die in agony through no fault of her own. Praise Him.
In every innocent comment there is always that one person who ruins the mood. If you have nothing nice to say, don't say it.
She's the cutest and most hopeful little kid I've ever seen omg
I'd like to know how Ellie is doing today
Edit:
Holy crap 919 likes?
@Junkers Ju 87 what-?
@Junkers Ju 87 oh I think it’s because her story is famous and her account Is for raising money for research like his comment said.
^ what just happened?
@@SummeRain783 I'm not sure. Just as confused. Maybe one person thought the *_woman_* who spoke about Elle's Twitter was a man. So they were trying to call her out as a pervert/chester. Good grief.
@Junkers Ju 87 YO! *PAY ATTENTION!!*
_Holly Higgs,_ is the *WOMAN* who knows Ellie's Twitter account. *_Holly Higgs is the original poster._* NOT a man! She is NOT a Chester, pervert or stalker.
*_You stating, "YEAHHHHH." Only brings suspicion onto yourself._*
Do your own research before you attempt to call someone out for nothing. This little girl's Twitter account is EVERYWHERE.
_GET THAT?_
*EVERYWHERE! ! !*
I have not logged into Twitter since 2018. I did this morning *for my own research* and Ellie was listed as people I may know, or would like to follow. Most likely because I do lots of fundraising and volunteering.
Then again, that's how my Father raised me all the way up until he died.
*EDIT:* stupid google pixel autocorrect - switching back to Samsung.
Praying for her
Fellow Traveler a research hospital, lol, or just go ahead and send all your savings to that Nigerian Prince who sent you an email.
Evil Vhs A Nigerian prince won't do anything.
People call me a robot because I don't cry about anything, but I cried when this video ended.
How come I also don't cry about everything because I don't want to be seen as a crybaby.
It's weird when people cry they get call as a crybaby but when you don't cry they said why didn't you cry are you a robot they just can't make up their mind
Oh its okay to cry sometimes
I really love how strong and positive she is. Having a rare disease is hard because nothing is really known about it. But the way she stays strong and fights for herself is incredible. I really love her personality and how bright she is. Her parents are also very strong and did a good job in staying with their daughter.
2:28 had to pause the video to mentally process the chicken man.. that was definitely unexpected
It's the mascot from the school
Shes so pretty child.. god bless her. Go girl.
DO THE CAPTIONS REALLY HAVE TO BE IN CAPS????
I DONT UNDERSTAND WHY
IT’S NETFLIX
IT’S SO STRANGE ISN’T IT????
IKR
SO COOL WOW
the doctor looks like buddy from cake boss
Ashley Marie YES! he looks exactly like him!
HE DOES
"I dont feel good about getting rid of my condition, if i get rid i will not be myself!" Such a life lesson she taught
True, so many people wish they could be unique and have a deadly disease that kills them at 15.
She will win this battle. She has battled for a long time and it is time to stop the battle. Everybody pray for Ellie. God bless her.
@@thekittybeans amen
She is amazing. So mature and articulate and a big loving and compassionate heart.
Sometimes in the future:
“Have you got the test results back?”
“Yes, it’s awesome…”
“I’m so sorry to hear that”
*hug each other and cries
What a powerful kid. Brought tears to my eyes.
She's so pretty 💗
Captain Crunch I know right x3. She's an adorable little girlie.
Captain Crunch why is this relevant?
Everyone's beautiful on the inside.
@@luizaspinosa3261 7
Praying for this little girl she's beautiful
Such a pure child. Many many many many many prayers for her hope she gets well soon.
I also have a rare disease but much less intense and much less rare than hers. Still deadly though. I am 25 but this young girl half my age has more courage and positivity than I could ever have.
I admire her. She's giving me courage to fight. I hope both our diseases along with other rare ones get their respective cures.
Also, the statement her mother said is one of the best parent traits. My mother basically feels the same thing. Parents love their child/ren so much that they would wish to have their child's sickness instead. I can't imagine the pain they experience seeing their children suffering.
She is so brave. God bless her
She's a lovely child. All the best to Ellie and her family.
I have a chronic pain condition with post traumatic stress syndrome which I find hard to live with. Elle you are the most (beautiful) amazing young lady. I have days where I have to fight to get out of bed. But you have the most amazing outlook after seeing you and your condition you have shown me that you are one of the strongest person I have ever seen. You have an amazing outlook on your life and on what you what to do with that life. So now when I am in hospital and crying my eyes out I will think about you and pull myself together. Thank you so much for sharing your story. My heart is with you princess 👸. You can and should be very proud of yourself. I will keep you in my heart 💓 everyday.
How in the world did 452 people dislike? Please someone tell me why. Even though there is no possible reason... She is so inspirational and kind and brave.
The brain disease is NOT awesome. Ellie is! 😘❤️ Keep fighting, girlie! You’ve got the strength of a warrior. Heck, you’ve got the strength of an endless army of warriors.
What a beautiful girl! Ellie your so inspirational
I love that she acknowledges that boys get the disease too, sounds like something I would have said as a kid, we both like to acknowledge everyone equally.
Bless her heart, she is so resilient. I can’t say I’d be that positive. Kids are amazing.
What an angel❤️ hope she lives a long, great life filled with happiness and positivity!
Who ever disliked this video is just mean
I think some people think of it as disliking the disease not the video.
Novemu I think the people who like it are supporting her
Maybe they disliked it because they are upset that she has the disease?
Ice cream Guru hi fren ||-//
Nove I think the people who liked it are supporting her and like Ellie not the disease
i’m sorry but the doctor looks like he should be in cake boss
PLSSSSS-
0:34 "6 7 8 9 10 kaput" She's so cute! with her little fingers lol, I hope she's doing okay.
Bless her - she seemed so sweet x
She is sooo strong and she always looks to the positive
She is such a beautiful child ❤ keep it up, girl!
When I was here age, I can't even read, yet this girl is starting a campaign. Neat, some people are really born to move mountains, and us to follow
What a pity that a strong minded courageous young girl has to go through this. If the world had more people who are as slightly open hearted as her we'd be living in a much better place 💝
What an amzing human being. We need more
Why is it that good people always suffer or die first? I mean she's too precious and lovely to have that kind of disease. Sending love to this girl❤
We need to pray for this young girl and all children with rare disorders. I prayed and I'll pray again.
The 35 people that have disliked this are heartless.
Blueberry Muffin how?
They can't breathe because they're heartless Ha-ha-ha...
i hate myself
Strong baby girl..get well soon..godbless u and ur family
I can see her as an actress. She has the personality.
What a smart and witty young lady. Really hope she will be getting better! The world needs more people like this
I have autoimmune encephalopathy, which is exactly what it sounds like. Its about half as rare as this and probably way less hellish to go through. I love that people are bringing increased awareness to these rare conditions. Keep on fighting “Awesome!” 💕
hamilfan here hello
She's an angel
SHE IS SO STRONG! Not to mention adorable! Sending love and prayers to her family! Hopefully she came overcome her disease! ❤️
This amazing little girl is wise beyond her age. Unbelievable!
What an intelligent little girl ! She is so bright, creative, well-spoken and innovative for someone so young. Ellie is a game-changer and I hope some sort of treatment or permanent symptom control will be discovered in the near future so she can grow up and be a model of hope to other children diagnosed with leukoencephalopathy. Best wishes to her and her family as they approach an uncertain future.
She was already amazing! So cute and well spoken. She's super considerate of others and very deserving of the award! BUT SHE ALSO WAS WEARING A 1989 SHIRT 💕 I'm so sad I saw this a few years later, but I hope she's still being awesome.
Yes I noticed that too!
Everyone needs to be as positive as this girl!!!
Poor kid. We need to count our blessings.
Stay strong Ellie. She's a positve thinker. Such an inspiration ❤
She is truly Awesome! What an inspiration to everyone.
Shes so precious 🥺
Ellie is wise beyond her years and I wish her and her family well
I wish her a lot of health.
I can tell... she will be AWESOME when she grows up whether she gets a cure or not she will keep going strong and being herself I’m sure she will keep spreading positivity no matter what happens. Keep going strong 🙂
She is SO CUTE! Shes a beautiful little girl. She’s now older then me, I wonder if shes doing ok now. Shes a wonderful little girl. I am SO proud of her for being herself. Praying for her and her family’s happiness
awwwww........brave little girl.....she truly is a messanger of hope, and deserves everthing she accomplishes.....
I hope they find a cure. This girl is so cute and dosent desuve to have this disease. No one desuves this diseass. Shes so sweet and so brave.
She is such a tough happy girl and I wish the best for her.
Intelligence oozes from every single cell of hers. God bless her and people like her.
She’s so strong.
That's sad! She's really brave and beutyful!
beautiful is the way to type it right.
she seems really bright. she may be a genius
She's a very inspiring person!!! I got a little teary when she said she wouldn't be herself if her disease got cured. I mean, I interpreted that as her accepting herself for all she is and just fighting and giving people with the same disease as her inspiration, hope and strength.
Extremely intelligent for someone that has been alive less than 4000 days at the time.