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A mother worries that her son may lose access to crucial cystic fibrosis medication if proposed health care reforms are carried out.

If you're the parent of a child with cystic fibrosis, you probably know the worry that comes along with sending your kid away to summer camp. To ensure that my own kids with CF were cared for at camp, I wrote the following letter outlining their special medical needs.

When my wife and I found out that our daughter had cystic fibrosis, we decided to start maintaining a daily schedule for her CF treatment and care. Here are five ways that we uphold this routine and encourage our little girl to take an active role in her own care.

Although becoming a father to my two boys has been one of the greatest experiences of my life, there is a delicate balance between being a parent and having cystic fibrosis. Fortunately, I've found a couple of tips that help.

Having trouble finding things to keep your toddler occupied during treatments for cystic fibrosis? Here are five tips that do the trick for my 3-year-old son, Major.

Cystic fibrosis can't take living away, especially when one loves life! 

When my 8-year-old daughter with CF found out that the disease is potentially fatal, I was grateful for her optimistic views on life and death. But deep down, I was saddened with the thought of a cure being so far away that I wouldn't be around to see it. Today, my fears have dwindled. 

When my two boys with cystic fibrosis ask me about death, I don't see it as something to be feared or ignored. Rather, I view it as an opportunity to share information about CF and the truths of life in an appropriate and honest way.  

They say it takes a village, and this is especially true when you are a single mother of two who also happens to have cystic fibrosis. Single parenthood as a person with CF can be crazy, but being okay with asking for help can make it easier.

I knew that I needed to make a change when I began checking on home from the office and checking on work at odd hours from home.