Cystic Fibrosis

I had a really difficult conversation with Trevor last week, one I've been dreading for years, but one that was incredibly important. A variety of factors came together that made this the time to finally address the topic head-on. The topic? Cystic fibrosis.

My nephew, Timothy, has cystic fibrosis. Timothy was only a few weeks old when he was diagnosed and our family was plunged into the confusion, pain and grief of knowing that this baby, one who was so loved, would have a shortened life with many struggles along the way. We threw ourselves into learning everything we could about CF. We went to CF benefits, fundraisers and events. We hoped and we wished and we prayed.

Timothy was three and a half when Steve and I got married in 2004. I'd done testing and knew that I carried the CF gene, so we visited a genetic counselor and tested Steve before starting our family. Fortunately, Trevor was born healthy. Timothy, then five and a half, came to meet his new cousin in the hospital and immediately developed a bond with him that has grown stronger and stronger over the years.

Trevor has grown up knowing that Timothy has cystic fibrosis and has to do a few things the rest of us don't (like take enzymes with food, hook up to a machine multiple times a day, etc), but that's been the extent of his knowledge. He's never questioned it. He just accepted the differences. In Trevor's mind, CF was inconvenient, but nothing more.

I've known for a few years that I'd need to talk with Trevor about what cystic fibrosis means for Timothy's life. It's more than a frequent cough, calculating the amount of fat in foods, and taking ocean-themed vacations (because exposure to salt air is one of the best treatments for CF). But when is the right time to tell a child what else a cystic fibrosis diagnosis means?

In our case, the time came now because Timothy is currently in Australia on his Make-a-Wish trip. Trevor knew what Make-a-Wish was, but didn't understand why Timothy would get a trip. I told him more about cystic fibrosis, that it's a serious, life-threatening condition. We went to websites together and looked back at old pictures, like the ones of Trevor visiting Timothy in the hospital. I explained everything I know, including the fact that Timothy is doing very well right now and that taking his Make-a-Wish trip does not mean that his health is worse than before. In fact, he is having the time of his life!

The other thing that happened last week that made this the perfect time to teach Trevor more about cystic fibrosis is that he began to work on his Disabilities Awareness belt loop. He made a beautiful poster with facts about cystic fibrosis, surrounded by 65 stamped roses in reds and pinks. (Click to read the story of 65 Roses.) He'll be sharing his poster with his Cub Scout den soon. 

Our family is committed to raising awareness about cystic fibrosis and doing everything we can to help researchers find a cure. Go, Team Timothy! 

For more information about cystic fibrosis, visit the Cystic Fibrosis Foundation website. You can make a donation to help fight cystic fibrosis here. For more information about Make-a-Wish, visit their website at www.wish.org, where you can also make donations. Thank you in advance for all who take the time to learn more about (and/or donate to) either organization. Your support means so much.