Mary Joyce lives with the rare Pompe disease, a degenerative muscle disease, which took her sister’s life in 2013.
TRACTOR MARY JOYCE KNOWS HOW TOGET GRANDSON WILLIAMS ATTENTIONTO ENJOY LITTLE MOMENTS AND THATNO MOMENT IS GUARANTEED I LIVEWITH POMPE DISEASE, WHICH IS APROGRESSIVE DEGENERATIVE MUSCLEDISEASE.EVERY DAY YOU GET A LITTLE BITWEAKER.SOMETHING SHE CAN DO YESTERDAYYOU CAN’T DO TODAY MARY FOUNDOUT SHE HAS POMPE DISEASE 17YEARS AGO.LOOKS LIKE YOU’RE HEALTHY ON THEOUTSIDE.BUT IF LIKE IT’S ALL INSIDE,THAT’S WHY I SAID THAT’S HOWPEOPLE IT JUST LIKE MY MUSCLESARE LIKE RUBBER BANDS JUST LIKENOODLES HER BIG SISTER.SHIRLEY WAS DIAGNOSED FIRSTYEARS AFTER NOT KNOWING WHAT WASWRONG.SHE WOULD WALK HER HER GIRLS OELEMENTARY SCHOOL IN THE WESTAND THEN PULL THE AT THE LITTLEONE IN THE WAGON.SHE GOT TO SCHOOL BECAUSE I WASSO EXHAUSTED.I’M NOT SURE I CAN GET HOME THEGIRLS GREW UP SEEMINGLY HEALTHY,CERTAINLY INSEPARABLE EVENSHARING THE SAME PECULIARITIESWE WERE ACTIVE BUT YET WE WERETOLD WE HAD WEAK KNEES IN 2004SHIRLEY TOLD MARY ABOUT A TRIALFOR A DRUG TO TREAT POMPEII BOTHGOT IN A YEAR LATER.THEY FOUND OUT ONLY MARRY GOTTHE REAL DRUG.I FELT SO BAD, BUT SHE DID NOTGET THE DRUG.AND THAT JUST BROKE MY HEART.I FELT GUILTY.HE’S LIKE, WHY DID I GET IT?YOU KNOW, I DIDN’T DESERVE IT.SHE WAS HAVING THE SYMPTOMSSURELY DIED FROM POMPE DISEASEIN 2013.ASK MARY WHAT SHE MISSES MOSTEVERYTHING.I HAVE NO ONE TO CONFIDE IN NOWONDER THEY CALL EVERY DAY ANDTALK THESE DAYS EVERY OTHER WEEKAND NURSE COMES TO MARY’S HOUSEMIXES MEDS AND SETTLES IN FOR ADAY-LONG INFUSION THERAPYKEEPING MARY ALIVE EVERY DAY.I WAKE UP.I OPEN MY EYES.I’M SO THANKFUL.AND I CAN SWING MY LEGS OUT OFBED AND STAND UP.I’M THANKFUL THANKFUL FOR STOLENMOMENTS.I JUST WORRY ABOUT MAINLY TODAYBECAUSE I DON’T KNOW WHAT KINDOF TOMORROW COULD
A little girl who is the only person in the world with a rare "Benjamin Button" disease has gone viral on Tik-Tok after..