ALEXANDER ANTHONY WILLIAM
MY NAME IS KRISTA, I LIVE IN NEW BRUNSWICK, CANADA, I HAD MY SON ON MARCH 25, 1994 BY EMERGENCY C-SECTION, HE WEIGHED 5LB 13OZ, HE HAD WET LUNGS SO HE HAD TO STAY FOR 21/2 WEEKS IN THE HOSPITAL. DURING THIS TIME HE WAS HOOKED UP TO ALL SORTS OF EQUIPMENT AND WAS BEING FED THROUGH A TUBE WHICH STARTED AT 1CC OF MILK, BY THE TIME HE LEFT THE HOSPITAL HE WAS DRINKING 4-6OZ PER FEEDING.
ON JUNE 7/1996 WE WERE CALLED INTO THE FAMILY DOCTORS OFFICE AND TOLD THAT ALEXANDER HAD RECIEVED BLOOD PRODUCTS FROM A MAN WHO DIED FROM CJD, I CAN STILL REMEMBER SAYING,"I'M SORRY, YOU MUST BE MISTAKEN, ALEXANDER HAS NEVER GOTTEN ANY BLOOD OR PRODUCTS." THEN THE DOCTOR GAVE ME A LETTER SAYING THAT INDEED HE HAD BEEN GIVEN BLOOD, BY A DOCTOR WHEN HE WAS JUST A WEEK OLD.
MY HUSBAND AND I WERE SHOCKED, TO SAY THE LEAST, AND OUTRAGED ALSO, SINCE WE HADN'T EVEN BEEN TOLD, AND TO MAKE THE SITUATION EVEN MORE FRUSTRATING, OUR FAMILY DOCTOR DIDN'T HAVE A FACT SHEET, AND ALL HE TOLD US IS THAT IT IS AN INCURABLE, FATAL DISEASE. WE WERE HORRIFIED, AND I WAS TAKING IT HARDER THAN MY HUSBAND, FOR A WHILE I THOUGHT I WAS GOING TO LOSE IT I WAS SO SCARED, I JUST KEPT THINKING WHY? WHY DID THIS HAVE TO HAPPEN TO OUR LITTLE BOY?
ON JAN. 26/99 I WENT TO MY DOCTORS OFFICE, WANTING TO FIND OUT MORE DETAILS OF THIS PRODUCTS TRANSFUSION, AND COME TO FIND OUT IT HAPPENED ON AUG 22/94, AND FOR ALL THESE YEARS MY HUSBAND AND I WERE LED TO BELIEVE THAT THE TRANSFUSION OF BLOOD PRODUCTS HAPPENED AT BIRTH. TO THIS DAY WE ARE STILL TRYING TO FIND OUT DETAILS OF WHAT HAPPENED THAT DAY, AND NO ONE WE TALKED TO SEEMS TO HAVE THE ANSWERS WE SO DESPERATELY SEEK.
WE COLLECT ANY INFORMATION THAT WE CAN FIND, WHICH HERE IS NEXT TO IMPOSSIBLE. THERE ARE SO MANY UNANSWERED QUESTIONS ABOUT THE DISEASE!
ALEXANDER IS NOW 4YRS OLD, HE'S BRIGHT,
CUTE AND HAS A FUNNY PERSONALITY, IT JUST TEARS ME APART TO THINK
THAT HE MIGHT NOT HAVE THE FUTURE HE DESERVES.
HOW HAS THIS WITHDRAWAL NOTICE AFFECTED OUR FAMILY????
OUR FIRST FEELINGS , AS I REMEMBER VERY CLEARLY WERE PURE SORROW,
THAT DAY IS STILL FRESH IN MY MIND , EVEN THOUGH IT HAPPENED IN
'96 . WE FELT SO BETRAYED AND HURT. WE JUST COULDN'T BELIEVE
SOMETHING LIKE THIS COULD HAPPEN, NOT IN THIS DAY AND AGE . THEN
THE FEELING WENT FROM SORROW TO RAGE , WE WERE LOOKING FOR
SOMEONE TO BLAME , FOR A LONG TIME I BLAMED MYSELF, THEN I BLAMED
OUR DOCTOR. OUR SON HAD A ROUGH BEGINNING AND I JUST KEPT
THINKING WE'VE ALL FOUGHT SO HARD, HOW DARE THEY TELL ME THIS
NOW!! NOW I THINK, SO WHERE DO WE GO FROM HERE?? I WORRY ABOUT
THE 10-40 YEAR INCUBATION PERIOD...HOW DO WE KNOW THE SYMPTOMS
WON'T START WHEN OUR SON IS 10, WHAT GUARANTEES ARE THERE?? THEN
I THINK WELL WE DO HAVE TO TELL HIM , BUT HOW DO YOU TELL SOMEONE
SOMETHING LIKE THIS , SOMETHING THAT WILL AFFECT HIM SO DEEPLY.
THERE IS SO LITTLE KNOWN ABOUT THIS DISEASE, EVEN IF HE DOESN'T
DEVELOP THE SYMPTOMS , HOW DO WE KNOW THAT HE DOESN'T CARRY IT,
WILL HE GIVE CJD TO HIS CHILDREN?? WILL THESE DEFENSLESS CHILDREN
BE SHUNNED , AS THEY WERE WITH OTHER DISEASES SUCH AS AIDS??
WILL HE BE ABLE TO GIVE BLOOD?? IF SO HOW DO WE KNOW IT WILL NOT
START MORE INFECTIONS?? IS THIS DISEASE ONE THAT WILL EVOLVE AND
MUTATE , INTO SOMETHING WORSE AS SOME DISEASES HAVE?? WHEN WILL
PEOPLE START TO INVESTIGATE THIS DISEASE FURTHER?? IS THIS
DISEASE ANY LESS IMPORTANT THAN OTHERS , DOESN'T IT NEED TO BE
STUDIED??
NOW I THINK WE ARE JUST SEEKING SO MANY ANSWERS , BUT THERE ARE
NO ANSWERS THE SAD FACT IS THAT IF OUR SON DOES DEVELOP THIS
DISEASE , THAT'S IT'S STILL AN INCURABLE AND FATAL DISEASE.
JUST THE THOUGHT THAT ALL THESE INNOCENT CHILDREN COULD BE ROBBED
OF THEIR FUTURE SICKENS AND DISCUSTS ME TO NO END , SOMEONE NEEDS
TO PROTECT THE CHILDREN... WHO CAN DO THIS?? I BELIEVE THROUGH
STUDY AND TESTING , SOMETHING CAN BE DONE !
I GUESS ALL WE CAN DO IN THE MEANTIME IS SIT AND WAIT FOR WHAT
EVER THE FUTURE MAY BRING, GOOD OR BAD WE WILL TREASURE EVERY
MOMENT AS IF IT WERE THE LAST.
ABOUT A WEEK AGO I JOINED THE Blood-CJD ONELIST E-MAIL/GROUP, THIS HAS BEEN A BIG HELP, FINALLY WE ARE NOT ALONE, THESE PEOPLE UNDERSTAND OUR WORRIES, FEARS AND ANGER, AND ANSWER QUESTIONS AND HELP ME BY FINALLY LETTING ME SAY MY POINT OF VIEWS.
I JUST HOPE THAT SOON THERE WILL BE MORE ANSWERS AND MORE INFORMATION ON THIS DISEASE, AND SOME WAY OF TESTING THE BLOOD SO THAT THIS NEVER HAPPENS AGAIN IN THE FUTURE.
THANK YOU FOR TAKING THE TIME TO READ ALEXANDER'S STORY, AND JUST REMEMBER THAT YOU ARE NEVER ALONE, I KNOW THAT NOW AND AM GRATEFUL TO HAVE THIS WONDERFUL GROUP TO SHARE WITH.
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