> Klippel-Trénaunay-Weber Syndrome > Stories

My Brave Daughter

THURSDAY OCT 23,2008 @ 2:48AM I WELCOMED MY FIRST CHILD YASMIN SHE WAS THE MOST BEAUTIFUL BABY GIRL... I WAS TOLD SHE HAD A CONDITION NAMED KLIPPEL TRENAUNAY WEBER SYNDROME. AT FIRST I WAS LIKE UMMM OK WHATS THST. THEY EXPLAINED TO ME WHAT IS WAS... THEN I REMEMBERED HER DAD'S UNCLE HAS THE SAME SYNDROME BUT ON HE FACE MIND YOU MY DAUGHTER HAS HER ON HER LEFT LEG FROM HER PELVIC TO HER PINKIE TOE... SHE HAS HAD VARIOUS TREATMENT AND SURGERIES. NUMEROUS HOSPITALIZED STAYS. AS SHE GROWS OLDER... THINGS ARE BECOMING MORE COMPLICATED SHE IS TURNING 9 THIS YEAR... AND WE ARE UNABLE TO PURCHASE A STOCKING THAT SHE IS NEEDING DUE TO HER INSURANCE WON'T COVER IT... MOSTLY EVERYDAY SHE IS IN PAIN MOST RECENTLY SHE HAS BEEN LOOSING HER BALANCE ON THAT LEG AND HAS FALLEN 4 TIMES ALREADY JUST HAPPENS SUDDENLY. AS OF RIGHT NOW SHE HAS A TOTAL OF 8 DOCTORS THAT SHE SEES .. 

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