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1/14/14blog post

the Thirty-Year Hope

By guest blogger Susan Schwieterman

As a member of Dayton Children’s Women’s Board, I have the privilege of seeing how deeply this hospital affects families in our community. Being a part of this impact and hearing patient stories is truly gratifying, especially because of my own family’s history with Dayton Children’s. This is our story.

The Thirty-Year Hope

I was ten years old the day my sister Kelly was born. My older sibling Sandy had schooled me well in the art of being a fantastic big sister. Now it was my turn to be the “big” one, and I was thrilled. Even more overjoyed were our parents, who had a baby in their arms after struggling to become pregnant. Everything was perfect; until it wasn’t.

Two days after Kelly’s birth, doctors detected a blockage in her intestine and transferred her to Dayton Children’s Hospital for surgery and further testing. The day the test results were in, Dad came home from the hospital with devastating news: our baby sister had cystic fibrosis. Our family knew nothing about CF, an incurable genetic disease that causes the body to produce thick mucus that clogs the lungs and pancreas.

The conversation was a frightening blur.

Dad told us that most children with CF do not live beyond their teen years, but that researchers were working hard on the disease and could find a cure within Kelly’s lifetime. I envisioned scientists in white coats huddled around stacks of data and rows of test tubes filled with promise, and I felt a little less afraid.

As crushing as the CF diagnosis was, our family resolved to keep Kelly as healthy as possible and carry hope in our hearts that a cure would be found. Kelly remained in the NICU at Dayton Children’s for a month.

Fortunately, Dayton Children’s is a CF Foundation-accredited care center, staffed with a group of specialists, including doctors, nurses, respiratory and physical therapists, dietitians and social workers. This talented group worked with our family to help us understand the disease, connect with other CF families, and teach us how to take the best care of Kelly.

The most valuable advice our parents received was from Kelly’s pulmonologist. He urged them not to limit Kelly because of her CF, but to push her in spite of it. They ensured she lived an active little girl’s life of soccer games and Barbie dolls, sleepovers and swimming pools, with faithful pauses for aerosol treatments, chest therapy vibrations and pancreatic enzymes stirred into applesauce after every snack and meal.

They taught Kelly that although she may have CF, CF didn’t have her.

While Kelly’s health had its ups and downs—an occasional lung infection sent her to Dayton Children’s for a few days at a time—there were plenty more ups than downs.

Kelly was thrilled at age 9 to be selected as an Ambassador for Dayton Children’s. A highlight of this experience was the evening she twirled on the dance floor as a bridesmaid in Sandy’s wedding, and then was whisked off to appear on television for the Children’s Miracle Network Telethon.

Dayton Children’s continued to take excellent care of Kelly for the next 10 years, until she transferred to a doctor for adult CF patients.

Meanwhile, you could find our extended family walking, bowling, stair climbing—whatever it took—at every local CF fundraiser, hoping the dollars we raised would help fuel the discovery of a cure. In 1989, scientists pinpointed the gene responsible for causing cystic fibrosis. This lifted the CF community’s sense of optimism, as it opened the door to therapies targeted at correcting the defective gene. Advances in research and medical treatments began to enhance and extend life for those with CF, and Kelly was no exception. (Photo to the right is me and Kelly raising money for CF research during the 1990 “Great Ascent” stair climb.)

Into adulthood, Kelly continued to take charge of her disease and build her life’s story, defying the grave statistics conveyed to us upon her diagnosis. She graduated from The Ohio State University with a degree in nursing and has flourished in her profession—I am confident her experiences living with CF instilled in her compassion and skills beyond what she could ever have learned in nursing school. Kelly married her college sweetheart, Luke, and thanks to her good health, her doctor gave them the green light to start a family. Today, they have two beautiful children.

I admire the courage and optimism with which Kelly lives each day, taking exceptional care of herself despite the time-consuming regimen necessary to maintain her health. This perseverance has paid off immensely, allowing her to live a full life where CF is not a major factor on any given day; it’s simply a small part of who she is.

The big sister in me is grateful beyond measure that we’ve been able to grow up together, attend each other’s graduations, walk in one another’s weddings, hug each other’s children and become as close as sisters can be. Still, there are times when the fears I pushed deep down inside about the future of my sister’s disease would begin to surface. Moments when I’d admit the time we’ve had is not enough. I’d think back to that vision of scientists working on a cure, and allow those feelings of hope to replace the uncertainty.

During a doctor’s visit in November 2011, Kelly learned exciting news. A new drug called Kalydeco was showing profound results in clinical trials of CF patients with the same gene mutation as Kelly. It was the first drug available that fixes the basic problem that causes CF, eliminating the effects of the disease on the body. This medical breakthrough was very much a lucky break for Kelly. Although there are more than 1,000 different mutations of the CF gene, Kelly’s rare defect affects only four percent of the CF population. Approximately 30,000 children and adults in the United States have cystic fibrosis; this drug could help 1,200 of them.

Kelly began taking Kalydeco soon after the FDA approved it in January 2012. Earlier this year, she was tested to determine the drug’s effectiveness. After a few anxiety-filled days awaiting the results, Kelly received the most important phone call of her life.

The “sweat test”—the same method used to diagnose her disease 30 years earlier—showed NO SIGNS of Cystic Fibrosis in her body! When Kelly called me with her amazing news, we cried with joy and relief and for the first time spoke with absolute certainty about a future that will not be limited by CF.

A few weeks after that life-changing phone call, Kelly raised $2,600 walking in the CF Foundation’s Great Strides fundraiser with faith that someday all CF patients will hear the news that they, too, will live a CF-free life. As our family gathered around the Christmas tree last month, we knew we had already been given the greatest gift. I wish that same gift for families of children in our community suffering from any illness. Until then, there is Dayton Children’s Hospital, and there is hope.