>>> SHE'S A LOCAL TEN-YEAR-OLD
BATTLING A ONE IN A MILLION
DISEASE.
>> IT'S LIKE TRYING THE SAY TO
SOMEONE, I HAVE THIS.
AND THEY DON'T BELIEVE YOU.
>> GRACE HAS A DISEASE CALLED
SCLERODERMA.
>> OUR DR. FRANK McGEORGE IS
HERE WITH A CLOSER LOOK AT
SCLERODERMA IS.
>>, IT'S AN AUTOIMMUNE DECIDE
THAT RARE IN ADULTS.
WHEN GRACE FIRST BEGAN
DEVELOPING SYMPTOMS HER MOTHER
KNEW SOMETHING WAS WRONG BUT SHE
DIDN'T KNOW WHAT.
IT WAS THE START OF 2015.
THEN EIGHT-YEAR-OLD GRACE AND
HERR FAMILY WERE LIVING OVERSEAS
IN CHINA.
BUT MOM WAS WORRIED.
>> I KEPT TELLING MY HUSBAND
GRACE.
I WOULD CHANGE HER EARRINGS, HER
EARS SEEMED REALLY TOUGH AND
KEPT GETTING THICKER.
IT WAS GETTING HARDER AND HARDER
FOR HER TO BRUSH HER TEETH.
HER LIPS WOULDN'T MOVE FAR
ENOUGH APART.
SEEMED DIFFERENT.
>> I KNEW MY MOM WAS WORRIED.
I CAN TELL WHEN SHE'S WORRIED.
>> THEY SAW DOCTORS IN CHINA BUT
NO ANSWERS.
>> IN MY HEART I WAS PANICKED.
>> SHE STILL HAS JURY ROOM WHERE
SHE JOTTED DOWN POSSIBLE
EXPLANATIONS.
>> ON MARCH 15 WE FLEW BACK TO
THE UNITED STATES.
WE WENT TO DIFFERENT HOSPITALS.
>> THE WORD SCLERODERMA COMES
SKIN.
IT'S AN AUTOIMMUNE DISEASE THAT
CAUSES CONNECTIVE TISSUES IN THE
BODY TO HARDEN.
>> WHEN IT'S SYSTEMI THAT
MEANS ORGANS INVOLVED.
>> GRACE BEGAN AGGRESSIVE
CLINIC.
>> SHE DID VERY AGGRESSIVE
TREATMENT OF CHEMOTHERAPY.
SHE D IV AND ORAL STEROID.
>> WE WERE DOING ALL THE
TREATMENTS CAN AND I DIDN'T KNOW
WHAT TO THINK OF IT.
>> BUT IT WORKED.
>> WE STARTED SEEING A
DIFFERENCE.
>> GRACE IS NOW UNDER THE CARE
FORD.
>> OVERALL FAIRLY GOOD MEANT,
WHERE HER LUNG DISEASE HAS
REVERSED.
AND IT'S SOMETHING WE DON'T
TYPICALLY SEE OFTEN.
>> THAT'S NOT EASY BEING A CHILD
WITH A CHRONIC DISEASE.
>> A CHILD HAD DRONE DIFFERENT
EMOTIONALLINGS AND FEELINGS AND
FEARS THAT WE CAN'T IMAGINE AND
THEY CAN'T NECESSARILY TELL US.
>> ESPECIALLY WHEN YOU'RE ONE IN
A MILLION.
>> IT'S LIKE TRYING THE SAY TO
SOMEONE, I HAVE EC THIS AND THEY
DON'T BELIEVE YOU.
>> IT'S SOMETHING SHE'LL DEAL
WITH HER WHOLE LIFE.
THERE'S NO CURE.
BUT WE CAN HOPE THAT IT DOESN'T
AGAIN.
>> GRACE AND HER FAMILY ARE
WORKING TO RAISE AWARENESS.
>> GETTING A LOT MORE RESEARCH
AND KNOWING WHICH TREATMENTS ARE
BENEFICIAL.
>> THERE'S A LOT OF CHILDREN AND
ADULTS OUT THERE WITH RARE
DISEASES AND JUST BECAUSE IT'S
IMPORTANT.
>> NOW, DOCTORS STILL DON'T KNOW
WHAT CAUSES SCLERODERMA BUT
DIFFERENCE.
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