CLINICAl TRIAL ONLY HOPE FOR NENA
Donation protected
My babies sick with a rare disease effecting less than 20000 people in the word, the prognosis is very bad long term and unfortunatly in the not so long term as well with her permenant imobillity becoming a reality by the time she graduates high school this was guaranteed to me by Nenas geneticist who told me that thier was NO HOPE that being confined to a wheelchair was not in Nenas very near future ....
Just as she REALLY begins her life at the age of 18 wene most peoples children will be moving out on thier home and becoming adults this time is a very frightening time for myself because some of the things that i am aware of as part of Nenas future i have yet to tell her even because i am so afraid for her and just want her to live life as normally and with out fear as possible since perm immobility is truley the least of what she will face if ....
A CLINICAL TRIAL SET IN IOWA STARTING SEPTEMBER ELEVENTH TO BE A PART OF A STAGE THREE CLINICAL TRIAL TO TEST THE EFFECTS OF ACTIMMUNE ON PATIENTS WITH FA ....
THIS IS THE ONLY HOPE FOR NENA CURRENTLY THIS IS THE ONLY DRUG EVEN CLOSE TO BEING READY FOR FDA APPROVAL......
MEANING NENA HAS ACCESS TO A MEDICATION POSSIBLY YEARS IN THE MAKING AS IT IS READY FOR RELEASE ALREADY HAV -ING BEEN FDA APPROVED IN THE PAST FOR ANOTHER CONDITION
NENA WILL HAVE ACCESS TO A MEDICATION THAT EVEN AFTER FDA APPROVAL WILL LIKELY BE HEALD UP FOR YEARS BY THE PHARM COMPANIES
IT BEING THE ONLY MEDICINE AVAILABLE OR SOONEST TO BE AVAILABLE TO TREAT FA A RARE DISEASE THAT NOT ENOUGH PEOPLE IN THE WORLD ARE VICTIMS OF TO MAKE RESEARCH A PRIORITY ..UP UNTIL NOW ....
BUT ALMOST TO LATE FOR NENA
IF SHE CAN NOT PARTICIPATE IN THIS TRIAL THAT WILL GUARANTEE HER THE MEDICATION WITH A BEG START DATE OF THREE WEEKS FROM NOW OR WORST CASE 7 MONTHS APON RECIEVING A PLACEBPO FOR THE FIRST SEVEN MONTHS NENAS PARTICIPATION IN THE PROGRAM WILL GUARANTEE HER THE MEDICATION AT THE COMPLETION IN APRIL.....AS APPOSED TO WAITING YEARS THAT SHE DOESANT HAVE WENE THIS DISEASE HAS ALREADY SO MUCH DAMAGE IN THREE YEARS AND WALKING BECOMING MORE AND MORE DIFFICULT
WE DO NOT HAVE YEARS .,.. MONTHS SOUNDS ABOUT IT ...IF GOD ALLOWS THAT ... WE WILL MAKE IT TO IOWA
AS HER MOM EVERY TIME I LOOK AT HER THAT DESPITE HER COURAGEOUS FIGHT IT IS IN FACT GAINING ON HER CAUSING HER SO MUCH LOSS PAIN AND FEAR FOR HER LITTLE BODY TO TAKE AND FOR ME NOT TO BE ABLE TO PROTECT HER FROM O NOT ALOT OF RESEARCH HAS BEEN DONE UP UNTIL RECENTLY TO TRY TO FIGURE IT OUT
BUT BECAUSE OF THE HUGE MONEY MAKER -IN THE MEDICAL DRUG PHARMECUTICAL; WORLD UNFORTUNATLY DEALS IN MARKET EXCLUSIVITY ... MEANING HOW LONG COMPANIES WILL HOLD UP THE RELEASE OF THE GENETIC OF THE ONLY POTENTIAL HOPE TO SAVE MY BABY... THE LOVE OF ,MY LIFE SOMEONE WHOME I LIVE AND BREATH FOR BECAUSE OTHER THAN HER SISTERS SHE IS ALL I TRULEY HAVE AND I LOVE HER SO MUCH AND CANT LIVE WITH OUT HER AND I HAVE THREE OTHER CHILDREN AND A BABY THAT NEED ME AND THIER BIG SISTER NENA TO LIVE AND TO LIVE AS FREE OF SICKNESS AS POSSIBLE
AS THIS DISEASE HAS PROGRESSED APON DIAGNOSES .....IN THE SIXTH GRADE ...
JUST THREE SHORT YEARS AGO
NENA HAS EXPERIENCED SO MUCH LOSS....
THE DEMISE OF HER FAMILY AS HER FATHER LEFT THE FAMILY EVENTUALLY TAKING SOME OF NENAS SIBLINGS AWAY... JUST AS FAMILY WAS NEEDED MOST WE BECAME A FAMILY DIVIDED....
NENA HAS MISSED HER SISTERS SO MUCH .... AND ME AS WELL I HAVE NOT COPED VERY WELL WITH THE STRESS OF NENAS SICKNESS AND THE BROKEN NESS OF MY FAMILY ///
I HAVE NOT BEEN THIER FOR NENA LIKE I SHOULD OF BEEN,,, I HAVE NEVER LOVED ANYONE ,MORE BUT I SIMPLY HAVE NOT BEEN A SAFE PLACE FOR HER ,,, TO BE ABLE TO BE AFRAID ... TO LET HER GUARD DOWN .... SHE HAS FELT ALONE ...
ALONE AND SICK......
AS WELL AS PERSONAL OF COURSE THE PHYSICAL HAS TAKEN ITS TOLL,,,,
SHE IS AFRAID TO HOLD HER BABY SISTER FOR FEAR SHE WILL DROP HER THIS MAKES HER SO SAD //// SHE WILL ASK ME TO BRING HER OVER TO HER SO THAT SHE CAN LOOK AT HER,,, JUST LOOK
NENA COUNTS HER 8TH GRADE GRADUATION DANCE AS HER PROM .... BECAUSE SHE IS AWARE THAT HER BODY IS FAILING
NENA IS PRO LIFE A VIEW THAT HER AND I HAVE NOT ALWAYS AGREED ON BUT NENAS DREAM WAS TO BE ABLE TO CARRY PEOPLES BABIES THAT FOR WHAT EVER REASON COULD NOT ,,, BECAUSE SHE SAID THAT THAT WOULD BE HER WAY TO POSSIBLY BRING BACK SOME OF THE LOST BABIES SOULS
NENAS DREAMS OF BEING A PARENT WILL MOST LIKELY NEVER HAPPEN AS HER DOCTORS HAVE ADVISED THAT IT WOULD BE A CATASTROPHY FOR HER TO EVER HAVE HER OWN CHILD .. NENA HAS BECOME AWARE OF THIS AND HURTS DAILY OVER IT ALREADY ......
MANY MANY LOSSES BUT NOT ENOUGH TIME ///.
NENA COULD BE A PART OF SOMETHING MAJOR SOMETHING THAT IF GOD SAYS WILL BE WILL BE ... AND I PRAY DAILY THAT DESPITE THE SINS OF HER PARENTS GOD WILL HEAR MY CRIES .... AND HE WI;LL ALLOW FOR THE PEOPLE TO HEAR ME BEG FOR JUST A GLIMMER OF HOPE FOR MY CHILD ... EVEN IF IT IS NOT TO BE IN THE LONG RUN THIS FAMILY NEEDS HOPE ... THIS FAMILY NEEDS 1000 MINIMUM IN THE NEXT SIXTH DAYS TO GET TO IOWA ... PLEASE CONTRIBUTE AS LITTLE AS 1 TO HELP MAKE A DIFFERENCE ..
THE BIGGEST DIFFERENCE IN SOMEONES LIFE
PLEASE SAVE NENA SHE HAS BEEN SO BRAVE BUT I FEEL I AM LOSING HER SHE HAS BECOME SO WEAK AND SO SAD SHE RECENTLY HAS NOT GONE OUTSIDE IN 14 DAYS CLAIMINING FATIGUE
SHES GIVING UP ... PLEASE HELP NENA
Just as she REALLY begins her life at the age of 18 wene most peoples children will be moving out on thier home and becoming adults this time is a very frightening time for myself because some of the things that i am aware of as part of Nenas future i have yet to tell her even because i am so afraid for her and just want her to live life as normally and with out fear as possible since perm immobility is truley the least of what she will face if ....
A CLINICAL TRIAL SET IN IOWA STARTING SEPTEMBER ELEVENTH TO BE A PART OF A STAGE THREE CLINICAL TRIAL TO TEST THE EFFECTS OF ACTIMMUNE ON PATIENTS WITH FA ....
THIS IS THE ONLY HOPE FOR NENA CURRENTLY THIS IS THE ONLY DRUG EVEN CLOSE TO BEING READY FOR FDA APPROVAL......
MEANING NENA HAS ACCESS TO A MEDICATION POSSIBLY YEARS IN THE MAKING AS IT IS READY FOR RELEASE ALREADY HAV -ING BEEN FDA APPROVED IN THE PAST FOR ANOTHER CONDITION
NENA WILL HAVE ACCESS TO A MEDICATION THAT EVEN AFTER FDA APPROVAL WILL LIKELY BE HEALD UP FOR YEARS BY THE PHARM COMPANIES
IT BEING THE ONLY MEDICINE AVAILABLE OR SOONEST TO BE AVAILABLE TO TREAT FA A RARE DISEASE THAT NOT ENOUGH PEOPLE IN THE WORLD ARE VICTIMS OF TO MAKE RESEARCH A PRIORITY ..UP UNTIL NOW ....
BUT ALMOST TO LATE FOR NENA
IF SHE CAN NOT PARTICIPATE IN THIS TRIAL THAT WILL GUARANTEE HER THE MEDICATION WITH A BEG START DATE OF THREE WEEKS FROM NOW OR WORST CASE 7 MONTHS APON RECIEVING A PLACEBPO FOR THE FIRST SEVEN MONTHS NENAS PARTICIPATION IN THE PROGRAM WILL GUARANTEE HER THE MEDICATION AT THE COMPLETION IN APRIL.....AS APPOSED TO WAITING YEARS THAT SHE DOESANT HAVE WENE THIS DISEASE HAS ALREADY SO MUCH DAMAGE IN THREE YEARS AND WALKING BECOMING MORE AND MORE DIFFICULT
WE DO NOT HAVE YEARS .,.. MONTHS SOUNDS ABOUT IT ...IF GOD ALLOWS THAT ... WE WILL MAKE IT TO IOWA
AS HER MOM EVERY TIME I LOOK AT HER THAT DESPITE HER COURAGEOUS FIGHT IT IS IN FACT GAINING ON HER CAUSING HER SO MUCH LOSS PAIN AND FEAR FOR HER LITTLE BODY TO TAKE AND FOR ME NOT TO BE ABLE TO PROTECT HER FROM O NOT ALOT OF RESEARCH HAS BEEN DONE UP UNTIL RECENTLY TO TRY TO FIGURE IT OUT
BUT BECAUSE OF THE HUGE MONEY MAKER -IN THE MEDICAL DRUG PHARMECUTICAL; WORLD UNFORTUNATLY DEALS IN MARKET EXCLUSIVITY ... MEANING HOW LONG COMPANIES WILL HOLD UP THE RELEASE OF THE GENETIC OF THE ONLY POTENTIAL HOPE TO SAVE MY BABY... THE LOVE OF ,MY LIFE SOMEONE WHOME I LIVE AND BREATH FOR BECAUSE OTHER THAN HER SISTERS SHE IS ALL I TRULEY HAVE AND I LOVE HER SO MUCH AND CANT LIVE WITH OUT HER AND I HAVE THREE OTHER CHILDREN AND A BABY THAT NEED ME AND THIER BIG SISTER NENA TO LIVE AND TO LIVE AS FREE OF SICKNESS AS POSSIBLE
AS THIS DISEASE HAS PROGRESSED APON DIAGNOSES .....IN THE SIXTH GRADE ...
JUST THREE SHORT YEARS AGO
NENA HAS EXPERIENCED SO MUCH LOSS....
THE DEMISE OF HER FAMILY AS HER FATHER LEFT THE FAMILY EVENTUALLY TAKING SOME OF NENAS SIBLINGS AWAY... JUST AS FAMILY WAS NEEDED MOST WE BECAME A FAMILY DIVIDED....
NENA HAS MISSED HER SISTERS SO MUCH .... AND ME AS WELL I HAVE NOT COPED VERY WELL WITH THE STRESS OF NENAS SICKNESS AND THE BROKEN NESS OF MY FAMILY ///
I HAVE NOT BEEN THIER FOR NENA LIKE I SHOULD OF BEEN,,, I HAVE NEVER LOVED ANYONE ,MORE BUT I SIMPLY HAVE NOT BEEN A SAFE PLACE FOR HER ,,, TO BE ABLE TO BE AFRAID ... TO LET HER GUARD DOWN .... SHE HAS FELT ALONE ...
ALONE AND SICK......
AS WELL AS PERSONAL OF COURSE THE PHYSICAL HAS TAKEN ITS TOLL,,,,
SHE IS AFRAID TO HOLD HER BABY SISTER FOR FEAR SHE WILL DROP HER THIS MAKES HER SO SAD //// SHE WILL ASK ME TO BRING HER OVER TO HER SO THAT SHE CAN LOOK AT HER,,, JUST LOOK
NENA COUNTS HER 8TH GRADE GRADUATION DANCE AS HER PROM .... BECAUSE SHE IS AWARE THAT HER BODY IS FAILING
NENA IS PRO LIFE A VIEW THAT HER AND I HAVE NOT ALWAYS AGREED ON BUT NENAS DREAM WAS TO BE ABLE TO CARRY PEOPLES BABIES THAT FOR WHAT EVER REASON COULD NOT ,,, BECAUSE SHE SAID THAT THAT WOULD BE HER WAY TO POSSIBLY BRING BACK SOME OF THE LOST BABIES SOULS
NENAS DREAMS OF BEING A PARENT WILL MOST LIKELY NEVER HAPPEN AS HER DOCTORS HAVE ADVISED THAT IT WOULD BE A CATASTROPHY FOR HER TO EVER HAVE HER OWN CHILD .. NENA HAS BECOME AWARE OF THIS AND HURTS DAILY OVER IT ALREADY ......
MANY MANY LOSSES BUT NOT ENOUGH TIME ///.
NENA COULD BE A PART OF SOMETHING MAJOR SOMETHING THAT IF GOD SAYS WILL BE WILL BE ... AND I PRAY DAILY THAT DESPITE THE SINS OF HER PARENTS GOD WILL HEAR MY CRIES .... AND HE WI;LL ALLOW FOR THE PEOPLE TO HEAR ME BEG FOR JUST A GLIMMER OF HOPE FOR MY CHILD ... EVEN IF IT IS NOT TO BE IN THE LONG RUN THIS FAMILY NEEDS HOPE ... THIS FAMILY NEEDS 1000 MINIMUM IN THE NEXT SIXTH DAYS TO GET TO IOWA ... PLEASE CONTRIBUTE AS LITTLE AS 1 TO HELP MAKE A DIFFERENCE ..
THE BIGGEST DIFFERENCE IN SOMEONES LIFE
PLEASE SAVE NENA SHE HAS BEEN SO BRAVE BUT I FEEL I AM LOSING HER SHE HAS BECOME SO WEAK AND SO SAD SHE RECENTLY HAS NOT GONE OUTSIDE IN 14 DAYS CLAIMINING FATIGUE
SHES GIVING UP ... PLEASE HELP NENA
Organizer
Danielle Jacques
Organizer
Manchester, NH