IN THE PICTURE BELOW IS AN nf TUMOR THAT CANT BE REMOVED BUT THIS PICTURE IS THE 2RD TIME ITS ALMOST KILLED MY DAUGHTER MEK HAS WORKED ON KIDS BY REDUCING THE SIZE SOME TIME UP TO 45% ..
THEY CANT REMOVE IT BECAUSE OF VOICE BOX AND AIR WAYS AND MY DAUGHTER IS SPECIAL NEED AND HAS NIGHT MARE OF THIS KILLING HER
THIS DRUG IS OVER £1000 FOR A MONTH OF PILLS
I CANT AND WONT LOSE MY DAUGHTER TO NF LIKE IVE LOST SO MANY FRIENDS
PLEASE SIGN AND SHARE THE HELL OUT OF THIS NOT JUST FOR ZOE BUT FOR EVERY ONE
I CANT DO THIS ALONE MORE THAN 1 VOICE CAN BE HEARD
TAKE A LOOK AF THIS
Updates
August 20, 2018
I am looking at the screen and honestly just stunned by how many people are stopping to read about Zoe because seeing this many strangers care about her tumor is something I never thought would happen. My hands are shaking a bit while I type this but it gives me so much hope that we might actually get someone in charge to listen to us about these pills.
12 Comments
Living with NF1 and constant tumors nobody should have to pay this much for medicine that keeps us alive
the picture is from 2008 the 1st time it almost killed her she was on life support 11 days (LONG DAY) and had 4 neck ops to stop the bleeding and it looks like it could start over again
People need to know more about Nf1/2 .
my grandaughter has it
My son has NF with a tumor in his arm that may not be able to be removed
Help her please
I have fairly mild form but still get pain
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IN THE PICTURE BELOW IS AN nf TUMOR THAT CANT BE REMOVED BUT THIS PICTURE IS THE 2RD TIME ITS ALMOST KILLED MY DAUGHTER MEK HAS WORKED ON KIDS BY REDUCING THE SIZE SOME TIME UP TO 45% ..
THEY CANT REMOVE IT BECAUSE OF VOICE BOX AND AIR WAYS AND MY DAUGHTER IS SPECIAL NEED AND HAS NIGHT MARE OF THIS KILLING HER
THIS DRUG IS OVER £1000 FOR A MONTH OF PILLS
I CANT AND WONT LOSE MY DAUGHTER TO NF LIKE IVE LOST SO MANY FRIENDS
PLEASE SIGN AND SHARE THE HELL OUT OF THIS NOT JUST FOR ZOE BUT FOR EVERY ONE
I CANT DO THIS ALONE MORE THAN 1 VOICE CAN BE HEARD
TAKE A LOOK AF THIS
Updates
August 20, 2018
I am looking at the screen and honestly just stunned by how many people are stopping to read about Zoe because seeing this many strangers care about her tumor is something I never thought would happen. My hands are shaking a bit while I type this but it gives me so much hope that we might actually get someone in charge to listen to us about these pills.
12 Comments
my daughter has plexiforms and the cost is just insane we cant afford it either
Living with NF1 and constant tumors nobody should have to pay this much for medicine that keeps us alive
the picture is from 2008 the 1st time it almost killed her she was on life support 11 days (LONG DAY) and had 4 neck ops to stop the bleeding and it looks like it could start over again
People need to know more about Nf1/2 .
my grandaughter has it
My son has NF with a tumor in his arm that may not be able to be removed
Help her please
I have fairly mild form but still get pain
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my daughter has plexiforms and the cost is just insane we cant afford it either