Sand Springs mother raising awareness about son's rare medical condition

Sand Springs mother raising awareness about son's rare medical condition

INFECTION RATE OF THE U-KVARIANT, FOLLOWED BY MICHIGAN.NEW TONIGHT...A SAND SPRINGS MOTHER ISFIGHTING FOR HER INFANT SON...TRYING TO RAISE AWARENESSABOUT A RARE CONDITION THATGIVES HIM JUST MONTHS TO LIVE.2 WORKS FOR YOU'S KATIEKELEHER SHARES THEIR STORY - ANDTHE MOTHER'S MESSAGE TO OTHERPARENTS.BAILEE WILSON, TRUITT'S MOTHER"It's just not fair.

Not fair atall."BAILEE WILSON'S SON TRUITT WASBORN A FEW WEEKS EARLY INJANUARY."He was beautiful.""He had really long fingernailsso we were kind of so we werekind of wondering why."AT TWO DAYS OLD - TRUITTDEVELOPED A BLISTER ON HISBOTTOM.DOCTORS WEREN'T SURE WHAT IT WASFROM.POSSIBLY AN ALLERGIC REACTION TOHIS DIAPER.OR MAYBE SOMETHING ELSE.BAILEE WILSON, TRUITT'S MOTHER"By the time we left thehospital when he was three daysold he had formed them all overhis bottom, his back, hisbelly."IT WASN'T THE DIAPERS.BUT INSTEAD - JUNCTIONALEPIDERMOLYSIS BULLOSA-HERLTIZ.A RARE GENETIC CONDITION THATCAUSES THE SKIN TO BE FRAGILEAND BLISTER EASILY.BAILEE WILSON, TRUITT'S MOTHER"Mostly friction.

Heat.

Youknow, like the rubbing of hisclothes can cause them.IT ALSO CAUSES BLISTERS INSIDETRUITT'S NOSE AND MOUTH.AND THE DIAGNOSIS - ISN'T GOOD.LIFE EXPECTANCY FOR J-E-B-HBABIES IS FIVE TO SIX MONTHS -WITH MOST NOT LIVING PAST THEIRFIRST BIRTHDAY.BAILEE HAS TAKEN A LEAVE OFABSENCE FROM WORK TO TAKE CAREOF TRUITT.WHICH INVOLVES POPPING ANDTREATING THE BLISTERS - DAILYBATHS - AND WRAPPING HIS ARMS,LEGS AND TORSO.BAILEE WILSON, TRUITT'S MOTHER"He's so strong.

It wouldn't befair for me to be weak.

So Ihave to be strong for him."NOW - SHE WANTS TO RAISEAWARENESS ABOUT E-B.SHE ENCOURAGES PARENTS TO GETTESTED TO SEE IF THEY CARRY THEGENE.AND IS SELLING T-SHIRTS ANDBRACELETS TO RAISE MONEY FOR E-BRESEARCH.MEANWHILE - SHE'S TREASURINGEVERY MOMENT SHE HAS WITHTRUITT.BAILEE WILSON, TRUITT'S MOTHER"Hold them tight.

Because youjust never know."WHILE BAILEE IS TRYING TORAISE MONEY FOR RESEARCH - THECOMMUNITY IS RAISING MONEY FORHER AND HER FAMILY WITH AGOFUNDME.IF YOU'D LIKE TO DONATE TOEITHER - YOU CA