"I try to reassure everyone who has been affected by this disease that CF isn't the end of the world if you don't want it to be."
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.

Don Warner

Click here to go to Don's podcast with BEF's Jerry Cahill.

Don on His Daughter, Angie

I think every family who has a child with CF goes through a time when they have to decide if they want to be public about it — who they want to tell and how involved they want to be with the CF community. Many kids don’t want to be defined by CF or be treated differently. That’s how our daughter, Angela, felt about it.

So, Angie had a “normal” life. At least, it was as normal as it could be. Kids with CF humble me with their discipline and courage. Sure, Angie was discouraged sometimes, but I never got the sense that she felt life was unfair. For most of her life, Angie thrived. After being diagnosed with CF at three months of age, she was not hospitalized again until she was 18. In high school, she was a cheerleader, an honors student, and had an active social life.

We worked with wonderful caregivers at the University of Minnesota. Dr. Warren J. Warwick believes in a very structured approach. He says, “You’re always in preventative mode. Don’t skip therapies, even when you feel well.” My wife Linda and I followed his advice. I was up at 5:30 a.m. every day to get Angie’s 60-minute therapy done, and we had a similar routine every evening. If she had a cold or more, we did therapy sessions three to four times per day.

Don on Losing Angie

We lost Angela at age 21 in 2003. She had complications with a bowel obstruction that resulted in surgery. Within hours of her surgery, she developed a sepsis infection that spread to her lungs. We stayed with her for 86 days in the ICU, with her on a ventilator and heavily sedated. Family and friends came daily to show their support and love.

During and after that experience, I decided that we would not keep a low profile any more. In 2003, we started the Angela Warner Foundation to support CF research. We started the Angela Brooke Warner Scholarship Endowment at the University of Minnesota in 2005. In 2008, we completed the Angela Warner Children’s Memorial and Prayer Garden at Gethsemane Cemetery in Minneapolis, Minn. It is a place comfort and peace for people who have lost a child and has a special area of dedication to those who have lost their battle with CF.

Don on Living with a Broken Heart

When Angela was diagnosed with CF, our world changed forever. But we had a full life, too. Angie was her mom’s best friend, and Angie and I shared a love of sports and enjoyed our special walks along Laguna Beach in California. Angie was a wise soul, and during those walks over the years, we would talk about the stars above and the ocean life below. As she matured, we also shared thoughts on life, mortality and eternity.

You never completely get over the loss of a child. You learn to live with a broken heart, and you try to stay connected to family and friends. That’s why I wrote a book, Walks on the Beach with Angie: A Father’s Story of Love, about our experiences. It details her 86 days in the ICU, but it primarily tells Angela’s remarkable story. Finally, the book shares our reflections on coping with enormous loss and how to move forward with life. I hope that it can help other families who are facing the similar challenges.

For more information about our activities in the CF community, please go to www.angelawarnerfoundation.org.

Favorite Food: Italian
Favorite Holiday: 4th of July
Favorite Pastime: Fantasy Baseball
Favorite Movie: Godfather I and II
Favorite Music: Neil Diamond
Favorite Color: Blue
One Word that Describes You: Goal-Oriented
Role Models: Ronald Reagan and Sir John Templeton
Words of Wisdom: The Serenity Prayer
Dream Vacation: Month touring French and Italian wine countries
You can find Don on: Thinking about it

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