Brent & Jenn
Jake- 11 (not a carrier for CF)Jeremy-4 (diagnosed at age 1 month through newborn screening)
Justin -9 (diagnosed at age 5)
Joseph-4 months (diagnosed at age 1 month through newborn screening)
All our boys are healthy, active boys. Justin and Jeremy run to stay healthy in our run group. They are home-schooled to avoid germs. They are active in our church in Sunday school. We go to Children's Hospital for their CF checkups every three months. The boys have their lungs and stomachs checked as well as blood work and a throat culture run to make sure they are staying healthy. The boys take over 24 pills and enzymes each day to help them digest their food. They also do chest therapy twice a day for 30 minutes to help shake up the mucus that gets trapped in their lungs. They also take special vitamins for their digestive needs. They do aerosol puffs to help open up the airways in their lungs.
Cystic fibrosis affects the lungs, digestive tract, and reproductive organs. The average life expectancy for someone with CF is 38 years. CF patients have to be extra careful around people with colds and the flu. They can catch germs very easily. They also have to stay away from other CF patients not to catch a particular bacteria that can be very dangerous in their lungs.
Justin is currently on a new drug, Kalydeco (Ivacaftor), that was approved recently by the FDA. We are thrilled that he is showing signs of the drug helping him. He no longer has stomach aches. He is growing and gaining weight. His lung function has also improved.We are extremely careful in the winter months to wear our masks when we do have to go out in public. We avoid sick people as well.