8-Year-Old Girl Battling A Rare Brain Disease She Calls ‘Awesome’ | TODAY

Hello... Has the baby recovered from sickness i want to help...

Ellie is an AMAZING kid! ☺️🙂 I know currently she’s not a child anymore (seeing this video is over 6 years old) but is now a young woman and I hope she’s doing amazing right now! ☺️ Everyone going through this disease is awesome too! 🙂☺️ don’t forget that!

Where is she now?

What a bubbly, positive and wholesome girl 😄 Apparently, the severity of symptoms can vary enormously between patients, so I hope in her case it's gonna be as mild as humanly possible

Ellies mom looks like something is going on with her too. She has a crooked mouth. Stroke maybe?

Poor little girls

So this disease is DARS2 defect disease. DARS2 is an Enzyme that work to assemble Aspartate amino acid inside mitochondria to its specific tRNA molecule. Eventually if not done correctly the other enzymes or proteins of Respiratory chain will become defective, which means that Myelin cells in brain ( a glial cells, namely ODCs ) will suffocate from low ATP energy and thus fail to synthesize Myelin and thus neuron axons can not conduct the signal fast enough initially and finally axons will degenerate and die via apoptosis when immune cells discover its DAMP signals it presents to them. This is the most simple way to explain it but I could go further more to explain it to scientists

Imagine being in the UFC with this disease

this little girl was exploited for fundraising. getting major munchausen syndome vibes here

My little brother is the first in the world with his disease. There has never been another child documented with it. Basically he can’t eat food and if he does he throws up until he goes into shock so he gets all his nutrients through an IV. His disease doesn’t even have a name that’s how rare it is. Ellie seems like a fighter and I love the fact that she wanted to call her disease Awesome. Adults look at that and think how could that be awesome but for a child that has only ever known disease it makes perfect sense. When she said that she doesn’t want to be cured because without this disease she wouldn’t be her I felt so much peace. Because if my little brother didn’t have his disease he really wouldn’t be himself ❤

Omg bless her

she wants to die

This baby looks like angel❤ my heart goes for her

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

What a smart and witty young lady. Really hope she will be getting better! The world needs more people like this

Hi

I find it a bit concerning that if another kid gets this the doctor is gonna say You have Awesome disease.

"Leukoencephalopathy." Yet another example of OBFUSCATION that we doctors practice on an ongoing basis. The profession uses obscure Latin and Greek derived words to obfuscate. Meaningless words, making the very word "Diagnosis" a big joke. I recall a movie scene years ago when a doctor tells parents that their child has "Coryza and Hyperpyrexia." They looked puzzled, and someone in the room said quietly, "Cold and fever." I still smile when I recall that scene!

Cause if we got rid of my condition...I wouldn't be myself 😮

Adorable kid

I have a genetic mutation i was born with. And i see how having it has impacted who i am but i think it is important to realize that we are more than our diseases.
I am not my disease.

i really hope we find a cure for her disease,
keep being awesome Ellie!

It's probably tougher for Americans to pronounce, but not as tough for British people to pronounce.
Luke-oh-en-seff-uh-LOP-uh-thee.

I LIKE THE NAME BRAIN FART ALPHA DISEASE, BECAUSE WHEN YOU HAVE A BRAIN FART YOU FALL DOWN. AHAHAHA AHAHAHA LOL

parents are pretty slow in the head

The mother looks like she's had a stroke because one side of her face seems paralyzed. There's no doubt the daughter got the issue from her mom.

I was waiting for the punchline this entire time i thought i was watching an Onion video

Alright then, I Vicente Rodriguez completely ACCEPT her.

As a person with a disability I can't pronounce myself I feel that her parents are using her to get attention and not the good kind, because instead of trying to raise as much funds as possible to research the disease to try to find a cure that will not only save their daughters life, but every other person who has and will have the disease they try to change the name just because it's hard to pronounce. If you told me I have a disease that is going to cut my life short the pronunciation is going to be the last thing I think of...

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SHES A SWIFTIE

'i am sorry to say you have awesome, you'll die in a few years'

I know this is sweet, but idk how I feel about it being called “awesome disease”, it’s too childish for it to be official. Could you at least name it after a doctor or something. I know a lot of you might openly disagree with me, but deep down inside you know that this is weird

She is awesome indeed...

Look at her mom, and how she holds her mouth and talk....I wonder if mother has some problems too?

Does anyone know if she’s okay these days?

What would be awesome is if we stopped funding wars, illegals, abortions, LGBTQ organizations, sending others to the moon, etc.. and instead raise money for rare diseases so kids dont die

Mom looks exactly like young Sally Field

Years have passed hope she is getting well or is well.

Be brave, little one.🙏😊💝

Yeah it came from her mom.

God bless u sweet
So beautiful angel

Does anyone else think the two anchors sound like the same person?

Ellie is amazing, hope she's doing well.

Why not lewbasciale?

the taylor merch she is wearing is my favourite part of this video

This little kid is so punk rock punk rockers don't even have a word for her

This is called being positive