My husband and I worked our butts off 2 years in a row, WITH NO HELP FROM ANYONE AT ALL HERE!!!!! Taking money out of our pockets, our mortgage, our home and his childrens mouths to coordinate not 1 but 2 bike runs in memory of our Annabella to RAISE MONEY FOR RESEARCH OF TRISOMY 18 AND FOR WHAT????? Only to have 20 families join while the other fools have been led by the wolves????? Never again!!! from this day forward I realize what a waste of money it was for us!!! All we did was hurt ourselves in the long run and worst of all shamed our daughters memory!!! WELL IT WILL NOT HAPPEN AGAIN!!! OVER 5000+ FAMILIES OF TRISOMY 18 WERE AWARE OF THIS... AWARE OF THE FACT THAT PARTICIPANTS WERE NEEDED AND THE MONEY WE RAISED WOULD HELP... RESEARCH PEOPLE, ITS WHAT THIS IS ALL ABOUT... WTH IS ALL THE DENIAL ABOUT???? I DONT GET IT... DAMN IT HAD MY DAUGHTER NOT LOST HER LIFE TO BEING DROWNED BY A FEEDING TUBE SHE WOULD STILL BE HERE AND I KNOW THIS ALL TOO WELL IN MY HEART!!! I WOULD WANT TO KNOW WHY SHE WAS ILL, WHY SHE WAS STILL SURVIVING, WHAT WERE HER DIFFERENCES, SO THAT WHATEVER I HAD TO DO TO MAKE THINGS RIGHT FOR HER I COULD DO!!! AND HERE I AM ALMOST 3 YEARS LATER STILL HAVING THESE DREAMS OF WANTING TO KNOW, WHY, WHY WAS SHE ILL, WHAT HIDDEN UNDERLYING ISSUE MADE HER ILL, WHY ARE THERE SO MANY OTHERS SURVIVING???? FACT IS, SHE IS DEAD DEAD DEAD AND I WILL NEVER KNOW NOW RIGHT!!!!!!!! .... ALL THESE QUESTIONS I ASK EVERY DAY AND FOR WHAT????? Its very sad to receive my Chromosome 18 Registry newsletter and to see this.....THAT I WASTED MY TIME, MONEY, TIME WHEN I SHOULD HAVE BEEN GRIEVING IN GUTTER INSTEAD OF PRETENDING I WAS FINE!!!!!!!!!!!!!! NEVER NEVER NEVER AGAIN, MY DESIGNS ARE BEING REMOVED AND I AM DONE DONE DONE WITH EVER TRYING TO HELP THE COMMUNITY OF TRISOMY EVER AGIAN!!!!! AND FOR THOSE THAT ARE NEW TO ME WELL IF YOU DONT LIKE WHAT YOU SEE HERE, MAYBE YOU SHOULD BROSWE MY TIMELINE AND SEE THE HELL THAT THIS COMMUNITY HAS PUT ME THROUGH SINCE MY DAUGHER DIED!!!!!!!!!!!!!!!! ALL I EVER DID WAS TRY TO GET ANSWERS AND HELP THOSE THAT ARE BLESSED TO WAKE UP WITH THEIR CHILD MORE THAN 76 DAYS!!!!!!!!!!!!! BEACAUSE EVERYONE WANTED TO BE PERSUADED BY OTHERS AS YOU SEE, THE GRANTS WERE DENIED!!!!!! NICE!!!! NO TRISOMY 18 RESEARCH STUDY STARTING!!!!! ALL MY GOAL HAS EVER BEEN WAS TO GET ANSWERS FOR ME, YOU, YOUR CHILDREN, AND MOST OF ALL...... OUR BELLA!!!!!!!!!!!!!!!!!!!!!!! Trisomy 18 We submitted an R01 to the NIH last year proposing to perform comprehensive assessments on 20 participants with Trisomy 18 over the age of 4 years. We wanted to know what was different about these individuals that allowed them to be the rare survivors with this condition. We also proposed to perform exome sequencing in order to determine if there were shared genetic variants that allowed them to survive The grant was not funded and we are planning to resubmit when we have completed enrollment on a sufficient number of participants. We initially had a great response from the families and well over 20 who began the enrollment process. But very few completed it. We will re-group and resubmit when we have sufficient participants.
Posted on: Sun, 03 Nov 2013 11:03:10 +0000
Trending Topics
Recently Viewed Topics
© 2015