We found out that our daughter Katie had Cystic Fibrosis on September 30 2008. Katie was 17 months old at the time.
Cystic Fibrosis, or CF, affects the lungs and the digestive system. CF is the most common, fatal, genetic disease affecting Canadian children and young adults. Forty years ago, most children with CF did not live long enough to attend kindergarten.
We were devastated. We were afraid. We were concerned for our child. We worried if our other child might have CF. We wondered what the future would bring. We wondered if we would have any more children. We had a million questions.
Over time, we got on our feet again. We spent time at the CF clinic. We met with other CF parents. We researched the disease. We spent lots of time on the internet. We read books. We watched movies. And eventually, we got to the point where we felt like we understood what we were dealing with.
This book is a compilation of the things that we learned in the early days. We share our personal story. We share resources that we’ve found helpful. We’ll explain how we’ve learned to navigate the health care system and how to optimize the help that is available to CF patients and their families.
Ideally, we’d like to provide a handbook that will comfort other families that have just learned that a loved one has cystic fibrosis. And, we’d like to provide context for those that are on the periphery of cystic fibrosis – friends and extended family members of those affected by CF.
Here’s the basic outline of the book:
1. Our Story – Intro
2. Practical Matters – Our first clinic visit
3. Lifestyle changes:
– Family priorities
– NO SMOKING!
4. Existential angst (optonal philosophy chapter)
5. A depressing reading list
– Medical research
– Community / Support groups
– The Internet Community
7. Charity work
8. Carrying on & Living life
9. One year on – where we’re at
– Having more children after a CF diagnosis
– Universal health care
– Additional resources
What do you think? Is there a need for such a book? Would you find it helpful? Am I missing anything in the basic outline above? Let me know… The more feedback I get, the better the end product.
This book is currently in development. Check back regularly for updates, sneak peaks and announcements pertaining to this book’s publication timelines.