SHE WASNT ALLOWED TO STAY WITH ME LONG AS SHE WAS NOT FEEDING AND SHE WAS COLD SO SHE HAD TO GO TO SCBU. SHE WAS THERE FOR 3 DAYS AND I SPENT AS MUCH TIME WITH HER AS I COULD I WAS UP AND DOWN THE LIFTS BETWEEN THE WARD AND SCBU.

WHILE I WAS PREGNANT WITH EMMA ONE OF HER OLDER BROTHERS HAD BEEN TESTED FOR FRAGILE X SYNDROME AS HE HAD BEHAVIOURAL AND LEARNING DISABILITY. HE DID NOT HAVE FRAGILE X BUT HE HAD A BALANCED TRANSLOCATION OF HIS CHROMOSONES. AS A RESULT OF THIS BOTH MYSELF AND MY CHILDRENS FATHER WERE ALSO GIVEN A BLOOD TEST. I WAS OK BUT HE WAS LIKE SCOTT A CARRIER.

THE WORRY WAS THAT A BABY COULD BE BORN WITH AN UNBALANCED TRANSLOCATION THAT COULD CAUSE MAJOR DISABILITY AND HEALTH PROBLEMS OR EVEN BEIN COMPATIABLE WITH LIFE.

EMMA WAS TESTED WHILE IN SCBU AND WHEN SHE WAS 2 WEEKS OLD I WAS TOLD THAT SHE HAD IN FACT GOT AN UNBALANCED TRANSLOCATION. NO ONE ELSE IN THE WORLD HAD THIS SO IT WAS CRYSTAL BALL TERRITORY . ALL THE DRS AND GENETICISTS KNEW WAS THAT SHE WUD BE VERY DIFFERENT TO OTHER CHILDREN AND SHE WUD BE UNLIKELY TO SURVIVE CHILDHOOD.

VERY QUICKLY AFTER TAKING HER HOME SHE BECAME VERY POORLY. SHE KEPT HAVING APNOEA AND GOING BLUE. TESTSSHOWED SHE HAD A HUGE HOLE IN HER HEART AND A PULMONARY STENOSIS. SURGERY WAS DENIED HER ON THE GROUNDS SHE WAS SPECIAL NEEDS AND LIFE LIMITED.

SHE WAS STILL VERY SMALL AND HAD VERY POOR HEAD CONTROL AND WAS NOT REACHING HER MILESTONES. SO BEGAN OUR REGULAR VISITS TO PHYSIOS AND DRS AND ALL SORTS OF PEOPLE WHO POKED PRODDED AND TOOK PICS OF THIS TINY LITTLE GIRL WITH HER OWN UNIQUE SYNDROME.

EMMA WAS BEAUTIFUL. SHE HAD HUGE BLUE EYES A TINY BUTTON NOSE AND A MOP OF VERY CURLY HAIR. I WAS AS PROUD OF HER AS I COULD BE AND LOVED TAKING HER OUT TO SHOW OFF. PEOPLE WOULD SAY SHES TO BEAUTIFUL FOR THIS WORLD. THEY WERE RIGHT BUT SHE HAD ALOT OF LIVING TO DO BEFORE HER SHORT LIFE WOULD END.

TO BE CONTINUED