It's been two years since we have posted an update on this page. With all the craziness in the world, I'm so happy to report an amazing development for our family that has changed our lives.
In January 2020 Henry started a brand new CF medication called Trikafta. He takes three pills a day (two in the morning and one at night). It is a game changer. Henry no longer does vest respiratory treatments or nebulizer treatments every day. In fact, for the first time ever we were able to travel without lugging around the Vest Machine and all the medicine that goes with it. His lung functions have stayed strong and his lungs feel great.
We have heard of so many amazing stories . . . people coming off of the lung transpant list; women with CF being able to have children; folks climbing mountains, skiing, running marathons when before they just had trouble breathing. It's truely something we are so amazed by and grateful for, and we give Henry lots of kudos for working so hard to stay healthy all those years soTrikafta can really work for him.
The Cystic Fibrosis Foundation funded the research and development of this drug. Which really means that YOU AND YOUR GENEROUS DONATIONS OVER THE YEARS HAVE MADE THIS NEW DRUG POSSIBLE. Here's the catch; this medicine doesn't work for everyone who has CF and it is very, very expensive. It is also not a cure. While the median age of a person living with CF has jumped to 46, it still isn't enough for me or Henry. We want everyone with CF to have access to this type of drug, and we don't want science to stop working toward a cure.
Please consider donating to the Cystic Fibrosis Foundation once again. It's proven that your donation changes lives!