How is Leah doing???
And our sweet girl decided to donate her hair this summer. So, she is sporting a super cute, super short hairdo and loving it!
Health Update and some BIG news
AND... We also have GREAT NEWS to share that is making waves not only in the CF community, but in the medical world. On July 2nd, the FDA approved Orkambi, the first drug developed to treat the underlying cause of CF in those who have two copies of the delta F 508 mutation, which is the most frequent disease-causing mutation for CF (and the mutations that Leah has)! Right now, it is approved for use in those who are 12 and older. We expect that within a year, it will be approved for ages 6 to 12. If you would like to read more about this exciting new CF treatment, please click here.
While this is not a cure, words cannot express how excited we are about the potential this has for Leah's future. We eagerly look forward to her benefiting from this new treatment when it becomes available for her age.
We are so thankful for all of you and your support as we continue to fight this disease. Thank You!!