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

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

[eelavsks]

Doctor: You have rare disease.
Ellie: How rare?
Doctor: You get to name it.

[DutchDread]

"boys get this disease I love this girl.

[faceshredder]

Imagine getting that diagnoses...
“Sir, we have your test results back. I regret to inform you....*long pause*
You have..awesome disease”
“Excuse me?”

[ViaH__]

*"If we got rid of my Condition I wouldn't be myself"*
Maybe I cried. 😢

[annabel]

“Tough to pronounce but not nearly as tough as this little girl is.”

[uwuhowell]

This girl is a very strong child, so are her parents. I wish the best for her

[maddy_fly]

Update: as of March 2021, ellie is still alive, and her family has raised over 400k dollars for research.

[me-hkro]

Okay but isn't anyone gonna inform how beautiful she is

[learning.growing.]

SHE'S SO FREAKING CUTE!!! What a champion.... ❤

[triciarose]

😢😢😢 Ellie you're such an inspiration to everybody of all ages.

[query]

"What disease do you have?"

Oh, I have "The awsome disease".

"Cool! And what does that stand for-?"

It stands for disease. No big deal.

[hughjazz]

This girl is so positive, smart and strong

[ghosttoast]

What a beautiful and brave little girl. She’s an inspiration ❤️

[kmdash]

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.

[boltPoke]

Gets disease

Girl: I see this as an absolute win.

[littlestepprints]

she is sooo smart!! But she's only 8?! This kid is amazing

[rilee]

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!

[keithandchrissysteury]

She’s still doing great today. She’s one of my good friends. She is amazing!

[trustme]

she’s such a sweetheart, she doesn’t deserve this :(

[ddaengella]

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