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  1. J

    Just one day off

    I'd give anything to go back to all the meds and treatments.When it gets tough just remember how lucky you are to still have your children.My daughter Jessica died on July 23rd 2014.....she was only 20 years old....there are so many young people that have died from this illness....think of them...
  2. J

    vertex submitted its application today for double f508del to the FDA and EU

    My daughter might have been helped by it but she died in July.Too late for her.
  3. J

    missing my daughter jessica

    I don't usually post...I only read.Today is the 4 week anniversary of the passing of my daughter Jessica.She was 20 yrs old and I miss her so much.I was holding her hand when God called her home.She went peacefully with morphine and in no pain.I guess ilthat is the best we can expect for the...
  4. J

    Starting the evaluation for transplant

    Hi- My name is Joanne and I also have a daughter with cf.She is 19 and needs to be listed for a transplant.She was just placed on oxygen 24/7 and also sleeps all day.Cannot get meds done and just came home from the hospital last week.Can you e-mail me so we can also talk in private...
  5. J

    FDA VX-770

    my daughters fev1 level is now at 20. she is 17 yrs old and we are hoping for the drug to come out soon so she has a chance(without a lung transplant)
  6. J

    FDA VX-770

    my daughters fev1 level is now at 20. she is 17 yrs old and we are hoping for the drug to come out soon so she has a chance(without a lung transplant)
  7. J

    FDA VX-770

    <BR>my daughters fev1 level is now at 20. she is 17 yrs old and we are hoping for the drug to come out soon so she has a chance(without a lung transplant)
  8. J

    FDA VX-770

    i heard vertex was sending to cf centers all over the country so the sickest patients could start on it before it was approved by the fda.
  9. J

    FDA VX-770

    i heard vertex was sending to cf centers all over the country so the sickest patients could start on it before it was approved by the fda.
  10. J

    FDA VX-770

    i heard vertex was sending to cf centers all over the country so the sickest patients could start on it before it was approved by the fda.
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