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.
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.
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.
As a CF mom, I'm always in a state of wonder about whether the choices I'm making are the right ones for my son with CF and the rest of the family.
I never had the luxury of time to reflect on the hardships that I experienced fighting cystic fibrosis because I was too focused on that particular day’s struggle. Still, there are two experiences that have stuck with me even though they were more than 10 years ago.
There are many ways you can support a family with a child or children with cystic fibrosis. Educating yourself about the disease and its treatments and offering to help without being asked are some of the best ways you can show you care.
I am excited that the Cystic Fibrosis Foundation has surpassed $100 million in research funding through its Infection Research Initiative and that it promises to continue to support infection research at the same rate as the past three years. I am hopeful that the patient community will hear more about funding updates for new infection research as we move forward.