We had the Great Strides Walk here in Hutchinson for Cystic Fibrosis for several years, when that dissolved we started going to the walk in Wichita. We haven't gone there in a few years but still collect what we can and send on to the CF Heart of America Chapter in Kansas City. Last week I ran into one of the mothers we met through the Cystic Fibrosis walk we had here in Hutchinson. She asked about Nick and I asked about her son with CF. Her son is 13 and going through a lot of the same things Nick went through at that age and still continues with some of them. He has a feeding tube which Nick doesn't have but was threatened with several times because of weight. If you don't know about CF you probably don't know that they have a very hard time keeping weight on because food runs right through them. Many people don't realize that it isn't just a disease of the lungs but also the digestive system. The pancreas is very much involved in the digestion so they usually get diabetes on top of everything else. We are thankful that Nick hasn't developed that yet. They take enzymes to help with digestion. Nick takes 7-8 capsules (enzymes) every time he eats meals or snacks to help with his digestion. He probably takes 15 or more medications in a day besides his breathing treatments and percussion.
There isn't a support group here in Hutchinson Kansas for people affected with Cystic Fibrosis but it would be beneficial if there were. I think the families could lean on each other and the knowledge that could be shared would be awesome. Sometimes it feels like you're going through this alone, the children, the mothers, the fathers, the siblings and yes the grandparents.