"CF may be a part of you, but do not let it define you."
The experience of living with cystic fibrosis is markedly different today than it was decades ago. Thanks to the discovery of the CF gene, the availability of effective drug therapies and advances in technology, the 30,000 Americans who deal with the disease day in and day out are living longer and fuller lives. In a word, they are thriving.

Bob Esparza

Bob's Story

In September 2010, I did a podcast with [BEF Volunteer] Jerry Cahill, and I talked about my son Tyler, who is 10 years old and has cystic fibrosis. In that interview, I said things that I’ve never said to Tyler, and that I’ve only said out loud to my wife and a few other people. (Click here to go to the podcast.)

A few days after the podcast went online, Tyler and I listened to it. When the podcast was done, Tyler’s first question to me was: “Will my life be shortened by CF?” It crushed me. I had to tell him that it might, but that we do the best we can with nutrition, treatments and exercise.

Bob on Tyler

So far, we’ve been very blessed. When Tyler was five years old, he was hospitalized with a bad asthma reaction. Our allergist decided to do a sweat test, practically out of the blue, because of one or two other symptoms Tyler had. He came back with a diagnosis of CF, and it was quite a shock. My wife, Susan, and I didn’t know anything about CF, and we don’t know anyone else on either side of the family who has it.

Tyler has not been hospitalized since his diagnosis five years ago, and we and our doctors have weaned him off all of the medications and enzymes. He doesn’t use a chest wall compression vest, and we don’t even have to hit his back at night. Basically, his symptoms are very mild. When he gets an infection, we’ve been able to knock it out with antibiotics. Our doctors at Children’s Medical Center in Dallas have been great. I feel sort of guilty when I see what other families and their children are going through.

So, Tyler has a life that is very normal for an active 10-year-old boy. His ambition is to be a Major League baseball player, and we give him access to as many activities as possible, because we know that exercise is so important to maintaining his health. He loves to play with his friends and his siblings (our son, Julian, is 12, and our daughter, Reagan, is 8).

Bob on Dealing with CF

For the first six months after the diagnosis, we were very protective of Tyler; it was like he was in a bubble. We told the staff at his school, and we brought in pamphlets about CF. We bought umpteen bottles of hand sanitizer, and we asked his teacher to keep away any kid who had a cold. We tried everything to keep him protected. But we realized that we were scaring him and that he was not having any symptoms, so we started to ease off. We realized there’s a difference between living with the disease and living your life.

We saw no reason that Tyler should be branded for having CF or that his dreams should be stunted when he’s doing so well. So we make sure he gets plenty of exercise, and we keep our house spotless, and we try to get him to eat well (but we all know how few vegetables any 10-year-old will tolerate!).

We don’t tell him more about CF than he needs to know at this point. He’s asked questions only a couple of times, like after listening to the CF podcast. Most of the time, he would rather play basketball or baseball with his friends. But, eventually, we will talk about it again. I hope that day is a long time from now.

Q&A WITH BOB ESPARZA

Favorite Family Activity: Playing in the pool

Best Home-Cooked Meal: Hamburgers on the grill

Favorite Vacation: Destin Florida Beach

Advice to Parents of Kids with CF: Our lives are pretty stressful as we cope with the realities; make sure you’re not just a parent but a best friend. Laugh, live and love.

Q&A WITH TYLER ESPARZA

Favorite Holiday: Christmas

Favorite Food: Lasagna

Favorite Pastime: Baseball

Favorite Movie: Avatar

Favorite Music: Pop

Favorite Color: Red

Nickname: Ty

One Word to Describe You: Reliable

Role Model: Derek Jeter

Dream Vacation: Going to New York City and watching the Yankees play baseball

Words of Wisdom: Do unto others as you would have them do unto you.