11 December 2009

Congratulations! You have Cystic Fibrosis!

 One of the most interesting things about having a newly diagnosed CF child is observing how the different organizations and companies have introduced themselves to us.

How exactly does one say you're-a-part-of-us-only-because-you-were-born-with-two-mutated-genes?  We'd love to see Hallmark take on that one! :)

We've heard a variety of different openings such as "welcome" and "thank you for joining..."  But these tactful beginning lines just don't do justice.  It just seems like somebody at some point should just print the obvious, "Congratulations!  You have Cystic Fibrosis!" 

Considering that we feel this way every time we begin reading the introduction to a CF letter, book or brochure, we couldn't help but laugh out loud when we opened the gift bag that arrived with our first order of Pancreacarb enzymes for Bennett the other day:

Wow! What a lucky kid you are! In addition to receiving your requested eight bottles of Pancreacarb enzymes, we've thrown in a goodie bag (you know, since you're gonna have to take enzymes for the rest of your life!...) 

You get your own bag: a rubber duckie, rattle, sippy cup, food holder - and baby spoon, by which you'll take those enzymes at every meal!

In all seriousness, this was a very kind thing for the Pancreacarb people to do.  This is actually a part of Pancreacarb's Healthy Start program which - believe it or not - provides FREE enzymes and vitamins to children during their first two years of life.  Now THAT's a gift! 

We are thankful for tactful beginning lines and free goodies as they cheer us up in the midst of a painful situation.  But we still find it a bit humorous to open welcome letters or gifts that we would not otherwise, each time fully expecting them to simply read:

"Congratulations!  You have Cystic Fibrosis!"


  1. Love the sense of humor in this post. :) Enjoy those enzymes!

  2. I agree - I love that you can laugh at stuff like this! I can just hear you saying it!

    But, in all seriousness, Breck, maybe this is a new calling for you. You could be a consultant to help pharmaceuticals, healthcare companies and non-profits communicate with people who have CF. Just a thought. Love you, girl!

  3. Hi,

    My name is Sharon Ray and I am the assistant editor of I am contacting you today in hopes of developing a relationship with your website; we have seen your site and think your content is great. offer a free informational resource to both the general and professional public on this terrible disease.

    I hope you show some interest in building relationship, please contact me at

  4. Wow! A rubber ducky makes those stinky CF diapers not seem so bad! ; ) Seriously, though, I have a 14-month-old with CF. Ultrace enzymes have a program for free enzymes and vitamins until they are FOUR! It's worth looking into to have two more years without paying for the enzymes. However, we did not get a rubber ducky. Dang!


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