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! 👊🏻
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
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.
"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.
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.
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.
@@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??
@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.
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!
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.
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
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 💝
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?😑😒
@@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
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!
@@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.
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..
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?
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.
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'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.
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.
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.
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.
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.
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.
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.
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 💝
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!” 💕
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
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.
