                                
>>> 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           
