MORE GRAMS OF SUGAR AND
NON-COMBO ORDERS.
FOR PARENTS IT'S AN EASY FIX.
LET THEM DRINK WATER INSTEAD.
YOU KNOW THE DAY THAT YOUR
BABY IS BORN, YOU CAN'T WAIT FOR
THAT FIRST SMILE AND WATCH THEM
TAKE THEIR FIRST STEPS.
BUT YOUR CHILD CRIES ALL THE
TIME AND YOU GOOGLE IT AND YOU
CAN'T FIGURE OUT WHAT'S
HAPPENING.
THIS HAPPENED TO A FAMILY
HERE AT HOME.
PARKER WAS BORN NOVEMBER 9,
2014.
HE WAS A HAPPY HEALTHY
BABY WEIGHING 8 POUNDS,
14 OUNCES.
BUT SOON THINGS CHANGED.
HE CRIED A LOT.
HIS DIFFICULTY FEEDING.
HE WOULD CRY WHEN WE WOULD FEED
HIM A BOTTLE.
HE WOULD JUST CRY AS IF HE WAS
IN PAIN.
THEY WERE DESPERATE TO FIND
OUT WHAT WAS WRONG WITH THEIR
CHILD.
AN EMERGENCY ROOM
PHYSICIAN SAID HE MIGHT HAVE
CEREBRAL PALSY.
AFTER WE LEFT THE DOCTORS
OFFICE, I SAT IN THE CAR AND I
JUST SAID, I PRAY HE DOESN'T
HAVE CEREBRAL PALSY, BUT, NOW I
WISH HE DID.
THAT'S BECAUSE THE INFANT
ACTUALLY HAD A RARE IN HERPTD
NEUROLOGICAL DISORDER THAT THE
SHOE MAKERS NEVER HEARD OF.
I ASKED IF HE EVER SEEN
ANYBODY WITH THIS DISEASE AND HE
SAID YEAH AND I ASKED HOW LONG
DID THEY LIVE?
HE SAID 2 YEARS.
WHEN ELIZABETH WAS 5 MONTHS
OLD, HER PARENTS WERE BLIND
SIDED BY THE NEWS.
THEY SAID GO HOME AND TAKE
LOTS OF PICTURES AND START
PLANNING A FUNERAL.
THEY WENT ON THE INTERNET AND
READ EVERYTHING THEY COULD..
THERE IS NO CURE FOR THIS AND
EVENTUALLY IT WILL TAKE HIS
LIFE.
ABOUT 4-5 HOURS INTO IT, I
STUMBLED UPON THE VERY
DEVASTATING PART OF THIS THAT IT
IS VERY PREVENTABLE.
WHEN THEY ARE SCREENED FOR
PROBLEMS, IT ISN'T IN EVERY
STATE.
HERE IN MARYLAND THEY ARE
TESTED FOR DIFFERENT HEALTH
ISSUES.
SINCE 2011, THE SMITHS
HAVE BEEN FIGHTING TO ADD THE
NEW SCREENING TO NEWBORNS.
OTHER STATES HAVE STARTED TO
TEST FOR KRAB A.
THEY HAVE SENTENCED MY
DAUGHTER TO DIE BECAUSE THEY
REFUSE TO ADD THIS DISEASE TO
THE NEW WATCH SCREENING PROGRAM
AS OTHER STATES HAVE.
ACCORDING TO EXPERTS, IT'S A
LITTLE BIT MORE COMPLICATED.
A
COMMITTEE THAT ADVISES THE
FEDERAL GOVERNMENT LOOKED AT
RESULTS WITH CRAB A SCREENING
AND DID NOT REQUIRE THE TEST TO
ADOPT IT.
IT'S TO IDENTIFY THE GENE THAT
IS ASSOCIATED WITH CRAB A.
BUT NOT ALL CHILDREN WHO CARRY
THE GENE DEVELOP THE DISEASE.
A TRANSPLANT IS THE ONLY WAY
TO CURE THE DISORDER.
LILY WAS
TRANSPLANTED AND JUST CELEBRATED
HER FIFTH BIRTHDAY 2 WEEKS AGO.
THE DISEASE PRETTY MUCH
STOPPED.
HER LIFE EXPECTANCY HAS CHANGED
FROM LESS THAN 2 YEARS OF AGE TO
ABOUT 15-20 YEARS OF AGE.
FOR PARKER, CRAB A QUICKLY
DEVASTATED HIS LITTLE BODY AND
IT WAS TOO LATE FOR A
TRANSPLANT.
HE DIED AT 10 MONTHS OLD.
I THINK THE HARDEST PART IS
KNOWING THAT THERE IS A TEST
THAT COST $6 THAT COULD HAVE
SAVED OUR CHILD'S LIFE.
EVEN THOUGH A TRANSPLANT ISN'T A
CURE AND IT IS A HARD HARD ROAD,
WE STILL WOULD HAVE HAD THE
CHOICE TO SAVE OUR CHILD THAT WE
DIDN'T GET.
WELL, FAMILIES HOPE THEIR
WORK WILL PREVENT OTHERS FROM
HAVING TO WALK IN THEIR SHOES.
THEY HAVE MADE PROGRESS GETTING
LAWS ON THE BOOKS.
THE MARYLAND SCREENING NOW HAS
IT'S OWN FUND AND THIS MONTH,
HOSPITALS MUST EDUCATE PARENTS
ABOUT THE NEWBORN TEST THEY CAN
BUY.