As told by her mother, Jeanine.
All Krysta ever wanted was the freedom to run.
She and her twin sister, Kara, were born six weeks premature, and even then, I knew Krysta was a fighter. But I also knew she had quite a battle to face. She was born with cystic fibrosis (CF), a debilitating and life-threatening disease that affects the lungs and digestive system.
Krysta wasn’t the first of her siblings to receive the diagnosis. Her older sister, Kayla, was also born with CF. After I had Kayla, I met with genetic counselors. I knew that there was a 25 percent chance that any other children I had could be born with the illness. But I was hopeful. And even though Krysta was born with the illness, she taught us all how to keep hope alive.
The doctors said the most important thing we could do was to treat Kayla and Krysta like typical children; administer the treatment and medications they needed, but never isolate them from the things they loved. So we jumped right in, and the girls spent their time playing softball, cheerleading and participating in 4-H. It kept us focused on positive activities, and it taught the girls that they could do–and could be—anything they wanted. Krysta didn’t understand the word, “no,” and she never let her illness get in her way.
As the years passed, Kayla and Krysta were typical girls, except for their ongoing hospital treatments. They called them “tune-ups” and it put them in the hospital regularly, for up to two weeks, for days filled with several nebulizer and chest percussion treatments.
After each hospitalization, Kayla seemed to grow stronger. Krysta didn’t. Her small body just couldn’t catch up. But she kept fighting. Most kids would love to miss a little school, but each time Krysta was hospitalized, she was bound and determined to fight that much harder for good grades. We were amazed how such a small package could deliver such a big punch.
Krysta wasn’t able to be part of the typical school social circle because of her constant treatments, but that never kept her from making friends. If she was going to spend so much time in treatment, she decided she could make friends there. And she did.
Krysta’s friend, Cynthia, was a few years younger than her and had also been diagnosed with cystic fibrosis. She and Krysta developed an incredible bond. In October 2000, Cynthia was placed in the intensive care unit. One month later, Krysta was rushed to the hospital. She, too, was placed in ICU. So she and Cynthia were together again, struggling for life.
Cynthia lost her battle, and it crushed Krysta. In her 14 years of life, she had already faced so many challenges, and now she had to cope with a tremendous loss.
Then there was more bad news.
Not long after Cynthia died, we were told that Krysta would not live without a double lung transplant. We knew that the lack of donors meant that Krysta might not survive the wait. But the hope that had carried us in the years before continued. After years of surgeries, treatments, medications, and being on oxygen, we knew Krysta’s fight was not over. Not yet.
In April 2001, Krysta was put on the donor list, and eight months later, she received her transplant. It was Krysta’s turn to shine.
The new lungs worked great and Krysta was breathing without oxygen. No more tanks, nothing weighing her down. On her 16th birthday, I asked Krysta was she wanted to do.
She wanted to run.
And so she did. In a park, on a beautiful day, hand in hand with her friends. And the smile she had on her face warms my heart to this day.
But her joy was once again met with challenge when we discovered that her body was rejecting her transplant. It was as if she traded one disease for another. The oxygen tank was back. And so was Krysta’s fighting spirit.
When she first received her transplant, she decided she wanted to play soccer, and she wasn’t about to give up that dream. She signed up for the team at her high school. The Colorado High School Activities Association tried to ban her from play because she was on oxygen, but they had clearly never met Krysta.
She won the fight. She was allowed to play a couple minutes each game as long as her oxygen tank was padded. She and her friends made a padded backpack, she got to play, and she finally felt like she was a typical kid doing typical things. As she entered her senior year of high school, Krysta was so proud she had been able to overcome so many things.
But Krysta’s body was tired and weak. During Christmas break, she was rushed to the hospital. Doctors told us Krysta could no longer fight her rejection. They must not have known Krysta either. When we told her what the doctors said, she told us that no one would tell her when to die. She didn’t have days, she told us; she had at least a month left.
One month to the day later, on January 31, 2004, Krysta passed away.
But even in death, Krysta kept on giving. Her organs were too damaged for donation, but her skin tissue and corneas went to heal people with burns and blindness. In life as in death, Krysta gave it her all.
We would have loved to see Krysta become a nurse as she had hoped. We would have loved for her to see her sister, Kayla, snow board down the mountains, or let Kayla—a stylist—give her a brand new look. We would have loved for Krysta to attend her sister Kara’s graduation at Colorado State University, or encourage Kara as she pursues her Master’s of Social Work in Massachusetts. That didn’t happen, but because of organ donation, we got two wonderful, precious years with our daughter, years in which we learned the value of tenacity and hope and perseverance.
Because of organ donation, we got to see our daughter run.
Krysta’s story was written by volunteer Gabrielle Johnston.
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