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HI, IM GLORIA AND IM 23 YRS OLD AND I HAVE LGMD/CMD THEY AREN'T TOO SURE. ONL GOD KNOWS. I ALSO HAVE A TRACHEOSTOMY, AND AM IN A WHEELCHAIR TOO. BUT JUST BECAUSE I HAVE THIS PROGRESSIVE ILLNESS IT DOESNT STOP ME FROM GOING ON IN LIFE AND FROM SMILING AND HELPING OTHERS IF I CAN.<br />
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MY PARENTS WERE TOLD I HAD MD AT BIRTH CAUSE I WOULD NOT MOVE , CRAWL, OR DO ANY OF THE THINGS THAT BABIES WOULD DO. AS I STARTED TO GROW I EVENTUALLY STARTED WALKING BUT I WOULD GET TIRED AND START FALLING DOWN ALOT OF TIMES THAT I WOULD GET CUTS, SCRAPS, AND SOMETIMES EVEN OPEN CUTS THAT HAD TO BE STITCHED UP. THAT'S WHEN MY PARENTS STARTED TO TAKE ME TO A NEUROLOGIST AT THE MDA CLINIC ABOUT THIS ISSUE THATS WHEN WE WERE TOLD ITS ALL DUE TO MY ILLNESS WHICH WILL SLOWLY BE PROGRESSING SO THEREFORE MY PARENTS WERE TOLD I HAD TO USE A WHEELCHAIR AT ALL TIMES SINCE THEN. SO AT AGE 7 I STOPPED WALKING WHICH WAS A BUMMER FOR ME CAUSE I WASN'T EXPECTING THAT TO HAPPEN TO ME AT SUCH EARLY CHILDHOOD. THEN WHEN I TURNED 13 I HAD DEVELOPED A LUMP ON MY BACK WHICH WE DIDN'T THINK NOTHING OF IT UNTIL WE SAW IT WAS GETTING BIGGER AS MONTHS AND YEARS PASSED BY. THAT'S WHEN WE STARTED GETTING CONCERN ABOUT IT SO THEN THATS WHEN I WAS TAKEN TO AN ORTHOPEDIC DOCTOR THAT'S WHEN THEY FOUND OUT I HAD SCOLIOSIS WHICH IS THE CURVATURE OF THE SPINE. I HAD TO THEN USE A BRACE FOR MY BACK FOR A FEW YEARS BUT THEN I HAD TO STOP USING IT ONCE I GOT SICK FOR PNEUMONIA AND DUE TO NOT BEING ABLE TO BREATH IN IT WITH THE BRACE ON MUCH LONGER AND IN WHICH THE CURVATURE WAS JUST GETTING WORSE. I WAS THEN PRESCRIBED A COUGH MEDICINE FOR THE COUGH CALLED PROMETHAZINE WITH CODINE WHICH AFFECTED MY RESPIRATORY SYSTEM WHICH NEARLY TOOK MY LIFE AWAY. THIS HAPPENED IN 2000 AT AGE 15 THAT'S WHEN MY PARENTS SAW THAT I WASN'T WAKING UP THE NEXT MORNING AS USUAL AND MY EYES WERE ALL WHITE AND BREATHING VERY SHALLOW NOT EVEN BEING ABLE TO TALK. THAT'S WHEN THEY CALLED 911 AND WAS TAKEN IMMEDIATELY TO TEXAS CHILDRENS HOSPITAL. ONCE WE GOT THERE THEY IMMEDIATELY STARTED WORKING ON ME AND RUNNED TESTS AND LABS TOO. THE DOCTORS SAID THAT WE HAS BARELY GOTTEN THERE JUST IN TIME BECAUSE I WAS BARELY BREATHING. BUT IF IT WASN'T FOR THAT THEY HAD CALLED FOR HELP IMMEDIATELY I WOULDN'T HAVE MADE IT. THEN THAT'S WHEN I HAD TO BE HOSPITALIZED FOR A MONTH CAUSE I WAS REALLY SICK WITH PNEUMONIA AND HAD DIFFICULTY BREATHING STILL. WHILE I WAS IN THE HOSPITAL I ENDED UP LOSING ALOT OF WEIGHT AND HAVING REFLUX TOO. THAT'S WHEN I HAD TO GET A G-TUBE TO GET MY NUTRIENTS AND WEIGHT BACK UP AND HAD TO HAVE A FONDOPLACATION TOO TO STOP THE FOOD FROM COMING BACK UP AND PREVENT IT FROM GOING INTO THE LUNGS. FOR THE BREATHING I HAD TO BE IN AN IRON LUNG WHICH IS A NEGATIVE PESSURE VENTILATOR IN WHICH I HAD TO BE IN IT DAY AND NIGHT OR FOR RESTING PERIODS WHICH WAS NO FUN AT ALL CAUSE IT SEEMED LIKE I HAD NOT MUCH OF A LIFE OR FREEDOM LIKE OTHERS. I THEN WAS ABLE TO GO HOME BUT YET STILL HAD TO USE THE IRON LUNG. THEN LIKE IN 2005 AND IN 2006 I GOT MULTIPLE SPONTANEOUS PNEUMOTHORAXES ON BOTH OF MY LUNGS SO THEN I HAD TO BE IN THE HOSPITAL AGAIN AND HAD TO HAVE CHEST TUBES IN THEM.<br />
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NOW IN 2007 I SEEMED TO HAVE EVEN MORE DIFFICULTY BREATHING , VERY TIRED THAT I HAD TO REQUIRE EVEN MORE OXYGEN AND NEITHER OF BOTH BREATHING MACHINES WEREN'T REALLY HELPING ME OUT ANYMORE WHICH REALLY HAD MY HEART WORKING HARD AND BEATING FASTER. I WAS THEN TAKEN IMMEDIATELY TO THE EMERGENCY BY MY PARENTS THAT'S WHEN I GOT ALL TESTED ON AND EXAMINED OUT. THAT'S WHEN THE DOCTORS TOLD MY FAMILY AND I THAT WE HAD THREE OPTIONS ONE WAS IF WE WANTED MYELF TO STAY IN THE IRON LUNG ALL THE TIME WITHOUT BEING ABLE TO COME OUT OF IT,SECOND OPTION WAS TO GET THE TRACHEOSTOMY DONE, OR THE LAST OPTION WAS OR TO LET ME GO. IT WAS A VERY HARD AND TOUGH DECISION FOR MY FAMILY AND I TO MAKE BUT THEN AGAIN MY FAMILY DIDN'T WANT TO LOSE ME JUST LIKE THAT BUT YET WANTED THE BEST FOR ME AND WANTED ME TO LIVE IF THEY CAN HELP SAVING MY LIFE. YES WE WERE ALL SCARED WONDERING ABOUT WHAT WOULD HAPPEN ,OR WHAT IF THIS OR THAT BUT WAS THE BEST CHOICE FOR OUR ME. EVENTUALLY THOUGH WE ENDED UP CHOOSING THE TRACH SO WE ALL PRAYED AND PUT IT ALL IN GODS HANDS HOPING EVERYTHING WENT WELL WITH THE SURGERY IN WHICH IT DID THANK GOD. <br />
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AS YOU CAN TELL I HAS BEEN THROUGH ALOT OF HOSPITALIZATIONS AND SURGERIES. ITS BEEN PRETTY ROUGH AND HARD BUT WE KNOW GODS BEEN WITH ME AND MY FAMILY THROUGH IT ALL AND EVEN IN GIVING ME A SECOND CHANCE IN LIFE BECAUSE IM STILL HERE FOR GODS GLORY, WHICH WE ARE SO THANKFUL AND BLESSED FOR WITH GOD . I GIVE BIG THANKS TO ALMIGHTY GOD FOR IT ALL AND SPECIAL THANKS TO MY FAMILY AND FRIENDS FOR EVERYTING THEY HAVE DONE FOR ME AND YET STILL ARE WITH GODS HELP , STRENGTH, AND GUIDANCE. I LOVE THEM ALL WITH ALL HER HEART . <br />
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NEVER FORGET &quot; BELIEVE AND TRUST GOD IN ALL THINGS FOR WITH HIM ALL THINGS ARE POSSIBLE!&quot; GOD BLESS YA'LL.<br />
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