Greer family fights to find cure for rare genetic disorder

Greer family fights to find cure for rare genetic disorder


THIS PAST SPRING WE TOLD ABOUT A FAMILY WHOSE LUNGS HAD A GENETIC DISEASE SO RARE THAT ONLY 500 BABIES WITH IT ALL OVER THE WORLD. THE LIFE EXPECTANCY MAY BE MONTHS THE DRACO SULLIVAN JUST CELEBRATED HIS THIRD BIRTHDAY. OUR DIANE LEE BRINGS US AN UPDATE ON THIS FAMILY’S UNCEASING FIGHT TO FIND A CURE. NO MEDICAL EXPERT WOULD DENY THAT DRAKE SULLIVAN IS HERE BECAUSE HE WAS BORN TO PARENTS WHO SIMPLY WILL NOT GIVE UP. THEY TOLD US HE COULD LIVE TO A MONTHLY JUST WSPA.com. YOU DO NOT MEET MANY FAMILIES WITH A LABORATORY IN THEIR HOME. IN 2 TO 3 DAYS A WEEK YOU’LL FIND DRAKE’S MOTHER TARA STUDYING BIOCHEMISTRY AT CLEMSON UNIVERSITY. WE KNEW THAT IN ORDER FOR US TO GET MORE INFORMATION THE MOMMY HAD TO GO BACK TO SCHOOL. RIGHT NOW THERE IS NO CURE FOR THE ONE IN 7000 BABIES BORN WITH A RARE GENETIC DISEASE THAT PREVENTS THE BODY FROM BREAKING DOWN AMINO ACIDS AND NOW THE O’SULLIVAN’S HAVE MORE REASON THAN EVER TO FIGHT FOR A CURE. VIVIAN WAS BORN TWO MONTHS AGO WITH A 25 PERCENT CHANCE OF HAVING MTH, THE DIAGNOSIS CAME RIGHT AFTER HER BIRTH. IT WAS HARD TO FATHOM HOW YOU HANDLE TWO CHILDREN SO SICK AND ALL THE EFFORTS WE ARE TRYING TO DO WITH RESEARCH AND HER OTHER THREE CHILDREN. WE GET OUR FEET UNDERNEATH THOSE AND JUST TRY YOUR BEST TO MOVE FORWARD. TAKES MEDICINE FOR FIVE TIMES A NIGHT. IT IS A FULL-TIME JOB AND SHE GOES TO CLEMSON A SAVONA FOUNDATION. ALL THOSE THINGS YOU DON’T HAVE ENERGY TO DO ALL THESE THINGS. THERE IS RESEARCH THE RE-SULLIVAN’S DID PRO CINNAMON EXTRACT HELPS BREAK DOWN GLYCINE HAS LED VIVIAN TO THRIVE BETTER THAN DRAKE DID HER AGE. AND THE FOUNDATION HAS RAISED ONE THIRD OF ITS GOAL TO RAISE GENE THERAPY TRIALS ALREADY GETTING STARTED. YOU DON’T KNOW THE JOURNEY OF WHAT IS AROUND THE NEXT CORNER BUT YOU KEEP GOING. YOU DO NOT STOP. I KNOW SHE’S VERY SICK AND DRAKE IS TOO BUT THEY ARE SUCH A BLESSING AND THEY TEACH US TO TAKE EVERY DAY WITH GRACE AND NOT TAKE ANYTHING FOR GRANTED. IN GREER, DIANE LEE, 7 NEWS. CLEMSON UNIVERSITY STUDENTS

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