Learning that your child has cystic fibrosis can be overwhelming. You may feel sad, guilty, scared, or even angry, but you are not alone. We are here to help.
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.
Our community's shared journey makes us unique and unites us in the hardest of times for some and the most hopeful for others.
Although not part of my son's “official” care team, our local pharmacist plays a key role in his cystic fibrosis care.
There are no easy remedies for the perpetual dance that the parents of a chronically ill child do to deal with the painful and enduring isolation. And personally, I found a sense of hopeless defeat.
CF demands a parent's time, but childhood lessons taught me that all of my children need my love and attention.
There were three important things that my parents did for me while I was growing up that helped me become an independent and positive person.
No matter how good your school district is, be prepared for unexpected challenges when getting your 504 plan in place.
It is hard to know how much to share with our kids. We want to protect them, but we also need to give them age-appropriate information or else their imaginations will run wild.
Sending our son to school was scary, but we have a plan to keep him healthy.