TIPS, TRICKS AND RECIPES
January 12, 2018
December 7, 2016
I Love You So...
February 15, 2018
SCREEN FREE PARENTING
Tips and Tricks
What Avie's been Eating
cold and flu season activites
September 29, 2016
Okay, so for those kids living with two copies of the delta F508 gene mutation (this is the most common mutation and it's what my little Avie Rose has)- life is about to get much, much better!
The "miracle" drug, Orkambi, that was developed by Vertex, has been approved for children ages 6-12! You can read more about this breaking news HERE
I've talked to adults with Cystic Fibrosis who take Orkambi, as well as one of the scientists who actually developed the drug and everyone says its a Godsend. It is a CFTR Modulator therapy, which is designed to correct the function of the defective protein made by the CF gene. What? I know. Here is the link so you can read about how this works: https://www.cff.org/Living-with-CF/Treatments-and-Therapies/Inhaled-Medications/CFTR-Modulator-Therapies/
Basically, it helps keeps CFers out of the hospital and reduces the rate of pulmonary exacerbations which lead to accelerated lung disease. Yay!
Now, kids can start taking it at 6 yrs old! I can't wait to see what this does to the average expected lifespan.