>>> AWESOME.
THE PERFECT WORD TO DESCRIBE A BRAVE YOUNG GIRL NAMED ELLIE.
>> SHE'S IN THE FIGHT OF HER LIFE BATTLING A BRAIN DISEASE.
IT'S TOUGH TO PRONOUNCE BUT NOT NEARLY AS TOUGH AS SHE IS AND WE
WANTEDWANTED TO SHARE HER STORY. >> HI.
MY NAME IS ELLIE. I'M 8 YEARS OLD.
>> WHEN ELLIE WAS JUST 3 YEARS OLD, HER MOM STARTED NOTICING
SOME ISSUES WITH HER BALANCE. >> I NOTICED SHE COULDN'T DO
THINGS THAT HERE PEERS WERE DOING.
SHE STARTED FALLING DOWN WHEN SHE WALKED.
>> AT FIRST DOCTORS THOUGHT THE GOOFY TODDLER WAS JUST GOING
FUNNY BUT ONE DAY AFTER SHE COLLAPSED ON THE PLAYGROUND THEY
KNEW SOMETHING MORE SERIOUS WAS WRONG.
>> THAT'S WHEN I REALLY STARTED TO LOOK FOR ANSWERS AND WE
STARTED GOING TO DOCTORS. >> AFTER MANY, MANY TESTS ELLIE
WAS DIAGNOSED WITH A BRAIN DISEASE THAT CAUSES TREMORS,
DIFFICULTY WALKING, SPEECH PROBLEM AND IN SEVERE CASES
EARLY DEATH. THERE ARE LESS THAN 100 CASES
WORLDWIDE. >> A RARE DEGENERATIVE BRAIN
DISEASE. >> THAT WAS A TOUGH DAY.
NOT EVEN FULLY KNOWING WHAT IT WAS BUT GETTING A GENERAL
UNDERSTANDING THIS IS A GROUP OF DISEASES THAT SENT GOING TO END
WELL. >> CAN YOU TOUCH THIS ONE WITH
YOUR FINGER, TOUCH IT? GOOD JOB.
>> MOST PEOPLE BY THE TIME THEY'RE IN THEIR TEENAGE YEARS
THEY END UP IN A WHEELCHAIR. IN ELLIE'S CASE WE HAVE BEEN
ABLE TO USE A MIXTURE OF DIFFERENT VITAMINS THAT PROVIDE
SOME BOOST INTO HER CELLS TO PRODUCE ENERGY.
ULTIMATELY THIS IS NOT A LONG-TERM FIX.
WE DON'T KNOW THE EXACT TIME FRAME BUT WE BELIEVE THAT WE
ONLY HAVE A FEW YEARS LEFT TO TRY TO STOP THE DISEASE FROM
GETTING WORD. >> IF YOU HAVEN'T HEARD OF THE
WORD IT'S BECAUSE THE FULL NAME IS HARD TO PRONOUNCE.
KNOWING THAT AWARENESS OF HER CONDITION WOULD HELP FIND A
CURE, ELLIE AND HER PARENTS LAUNCHED AN ONLINE CAMPAIGN TO
RENAME HER DISEASE. >> YOU KNOW WHAT'S MORE
FRUSTRATING THAN HAVING A RARE DISEASE?
NOT BEING ABLE TO PRONOUNCE IT. SERIOUSLY?
>> ELLIE CHALLENGED EVERYONE TO TRY TO SAY THE NAME OF HER
DISEASE. IF THEY COULD, THEY COULD ENTER
TO RENAME IT. PEOPLE FROM ALL OVER ACCEPTED
THE CHALLENGE. >> WE GOT A LOT OF SUGGESTIONS
FOR NAMES THAT INCORPORATED HER NAME OR SOMEBODY ELSE'S NAME WHO
HAD THE DISEASE. >> I DIDN'T LIKE THAT BECAUSE I
DON'T WANT A NAME LIKE PRINCESS DISEASE OR ELLIE DISEASE OR
ANYONE'S NAME. >> SO, LIKE, PRINCESS DISEASE
UNTIL SHE REMINDED ME THE PARENTS GET THIS DISEASE TOO.
>> AFTER MUCH DELIBERATION ELLIE CHOSE THE AWESOME DISEASE.
>> I LIKED AWESOME DISEASE. >> I DON'T REALLY KNOW HOW WE
FEEL ABOUT THAT BUT SHE WAS ADAMANT.
>> I PICKED IT BECAUSE IF IT MADE ME FEEL GOOD ABOUT THE RARE
BRAIN CONDITION, I THOUGHT IT WOULD MAKE OTHER KIDS FEEL
BETTER. >> HER PARENTS AREN'T THE ONLY
ONES WHO THINK ELLIE IS AWESOME. >> IT IS AN HONOR TO PRESENT
ELLIE AWESOME McGINN WITH A RARE IMPACT AWARD.
>> I AM PROUD OF ELLIE. SHE'S GIVEN SO MUCH OF HERSELF.
IF I COULD TAKE AWAY HER DISEASE, I WOULD TAKE IT AWAY A
TODAY. I THINK GOD PUT US IN THE
POSITION WHERE SHE HAS BEEN ABLE TO HELP OTHER PEOPLE AND SHE'S
DONE IT SO WELLINGLY. SHE SAID MOMMY, IF WE GET THAT
CURE AM I GOING TO HAVE MY DISEASE ANYMORE?
AND I'M, LIKE, WELL, NO HONEY. THINKING THAT WOULD BE GOOD AND
SHE STARTED CRYING. >> I WANT A CURE TO GET RID OF
MY MEDICINE, BUT I DON'T FEEL SO GOOD ABOUT GETTING RID OF MY
CONDITION. BECAUSE IF WE GOT RID OF MY
CONDITION I WOULDN'T BE MYSELF. >> WE'RE IN A LITTLE BIT OF A
RACE HERE, BUT A RACE FOR TIME FOR A CURE.
I KNOW NO MATTER WHAT HAPPENS TO HER, SHE WILL DEAL WITH IT WITH
A SMILE. >> OH MY GOD, WHAT A BEAUTIFUL
LITTLE GIRL. >> AND FAMILY.
GOD BLESS THEM. WE WANT TO THANK THEM
For more infomation >> THE GLUTE WORKOUT YOU NEED TO BE DOING - Duration: 14:24. 
For more infomation >> MY REAL FACE - Duration: 9:35. 
For more infomation >> Business Manager East Birmingham - J70514 - Duration: 2:08. 
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