First her update....we went to Houston and her having MAC in the past is still an issue for transplant. They want to see her MAC free for a year not 9 months.
There is some hope in the future.....A new drug has tested positive for her DF 508 gene to suppress her illness and her team says they feel positive the she can get off oxygen after 30-45 days. This new drug has passed trials and should be released in July -August. They are applying for "Compassionate Release" To rush the process for her.
So Elissa has a friend whom the movie "5 Feet Apart " is about. We had 45 friends attend the premier Wednesday night and yes it is about CF.
This was hard for me to watch but it is a wonderful love story.
https://www.youtube.com/watch?v=XtgCqMZofqM
Hope we can do more movie nights.