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.
Going on vacation without your child with cystic fibrosis can be hard, but here are some tips to help make it a little easier.
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 mom used to ask me what I wanted to be when I grew up, I told her that I wanted to be a dad. The journey to fatherhood with cystic fibrosis is full of obstacles, but I would give anything to pass on the traits I've gained from living with this disease to a child of my own.
Although my lung transplant was the end of one story, it was also the beginning of another, more difficult story.
Protecting your children with CF, at all costs, sounds like a loving thing to do until you consider what it may cost them. To keep a balance between their health and healthy childhood development, my husband and I have learned that it takes a prudent approach with careful and creative decision making.
After my transplant team said I was too sick to undergo a double-lung transplant, I was determined to get well enough so that I could.
After two double-lung transplants my lungs don't have CF anymore, but the rest of me still does. In a very real way, CF isn't "behind me" at all. And that's why I continue to fight.
I recently attended the Cystic Fibrosis Foundation Lung Transplantation Summit. Many of the areas for improvement cited by the experts matched what I have seen as the mother of a two-time double-lung transplant recipient.
In 2008, Brandon Rees underwent lung transplantation because his lungs had deteriorated to the point that he need a healthy pair to survive.