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Baker hopes his family’s cystic fibrosis story can save lives

John Baker’s daughter, Krista, died in 2000 of cystic fibrosis while waiting for a lung transplant. Baker has made it his decade-long quest to honor his daughter by raising awareness of the need for organ donors. “People ask me, ‘Don’t you think it’s time to pull back from this?’ I’m not ready.” (Dan Pelle)
John Baker’s daughter, Krista, died in 2000 of cystic fibrosis while waiting for a lung transplant. Baker has made it his decade-long quest to honor his daughter by raising awareness of the need for organ donors. “People ask me, ‘Don’t you think it’s time to pull back from this?’ I’m not ready.” (Dan Pelle)

The 14-and-15-year-olds, sitting in Ferris High School gym bleachers, yawned. They popped their knuckles. It was 10 in the morning, and some wore the bored stares of kids trapped indoors too long. Summer break was still more than a month away.

John Baker, 59, told the students that more than 110,000 people in the U.S. are in need of organ and tissue transplants, and 18 die each day waiting.

Yawn. Pop. Stare.

And then Baker showed them a photo of a beautiful young woman. Baker said: “I want you to know about my daughter Krista Lynn Baker. She was a graduate of Ferris High School. She suffered from a dreadful disease called cystic fibrosis.”

Krista died before lungs became available for her, he told the students.

The bored faces disappeared. The yawning ceased. Eyes filled with tears.

He urged the students to become designated organ donors when they get their driver’s licenses.

“I am not a father steeped in grief as much as I am uniquely positioned to tell a story that’s important for people to know,” Baker said later of his crusade.

On this Father’s Day, Baker’s story will be told here. It’s his hope the story will save some lives.

John Baker was a well-known athlete in his Gonzaga Prep years, lettering in track and football. His mother, widowed at 44, supported her four children by teaching; she earned a master’s degree while working full-time. When Baker helped with the dishes after dinner, his mother painted beautiful still lifes.

“Even in her weakest moments, when she felt she couldn’t manage all the responsibilities, she was motivated to excel,” Baker said. “She recognized the power of prayer and instilled that in me.”

In 1957, when Baker was 4, his 7-year-old sister died of cystic fibrosis. Little was known then about the genetic illness that compromises the lungs and digestive system and can result in early death.

Baker graduated from Washington State University in 1976; 35 years ago he married his wife, Ruthell. Daughter Nicole came along first. Krista arrived two years later. She was a frail baby and at 4 months was diagnosed with cystic fibrosis.

In 1984, Baker’s mother died of a heart attack.

One week later, Ruthell, a day away from giving birth to the couple’s third child, collapsed at home. The lining of her placenta had separated from her uterus.

“They rushed her into surgery and parked me in a sterile birthing room,” Baker remembered. “Then what seemed to be an eternity ended with a soft knock on the door. The physician came in, peeled off his mask. He said, ‘My deepest regrets.’”

A nurse carried their son, Robert John, into the room.

“I laid him out on the table and uncovered him, fully developed,” Baker said. “You could see your likeness.”

Baker didn’t know how to tell Nicole and Krista that their baby brother had died. His clergyman gave Baker the advice he followed. He said, “Let them see you cry.”

A fourth child, Amanda, was born a year later.

Baker introduced his family of girls to sports. They all played softball, including Krista. He coached Spokane Youth Sports Association teams, and Krista eventually assisted him when she was no longer able to run bases.

“At an early age, she learned to be mentally tough,” he said. “She didn’t discourage easily. She didn’t appreciate whiners.”

Krista graduated from Ferris in 1997 and enrolled at Eastern Washington University, but her health deteriorated and by 1999, “her hopes came to be based on one hope – to get a transplant. When she got listed, it was like winning the Lotto,” Baker said.

During Krista’s wait, Baker was diagnosed with colon cancer and underwent chemotherapy. Father and daughter attended Spokane Indians baseball games together, grateful for the distraction. Krista and her parents kept their beepers at the ready, hoping for the call from the University of Washington Medical Center.

The wait stretched on and on.

“She was down to 100 pounds, still clutching her beeper,” Baker remembered. “She said, ‘Dad, I’m not ready to give up.’ That was a Tuesday. Then Wednesday (after a doctor’s appointment) she put her beeper in my hand and said, ‘Dad, I gave it my best.’ ”

Krista was ready to die, but she had one final request. She wanted to donate her corneas after she died. Baker called a regional eye bank, now called SightLife.

He remembered: “It was a Saturday. I got a technician. I asked: ‘Do you really think a gal with this illness and having been on steroids all her life will be in a position to give corneas?’ He said, ‘There’s no blood flow to the corneas, so your prior health history is not consequential. Tell her it’s likely she will be a donor.’”

He told Krista the good news. She was so happy. Krista, 20, died Aug. 19, 2000, surrounded by her mother, father and sisters. Her corneas were successfully transplanted into the eyes of two young men in their 20s.

Grieving out loud

Traditionally in our culture, fathers remain in the background of a family’s grief, stoic. So when fathers open up about grief, people pay attention.

Writer Roger Rosenblatt’s daughter died suddenly at 38 of an undiagnosed heart ailment. He and his wife are now helping raise her children. His two books “Making Toast” and “Kayak Morning: Reflections on Love, Grief, and Small Boats” have sold well.

Rosenblatt told the Washington Post his advice for grieving parents: “You either lie down or walk. And since we’re vertical creatures, walk.”

Baker is a fearless grief walker. Within a year of Krista’s death, Baker helped pilot an organ donation awareness program aimed at teens. Now he and other volunteers visit all the Spokane Public Schools’ high schools and tell their stories.

“The power of a personal story is the No. 1 reason that will move anyone to have a conversation, to register as a donor. It truly makes people do something from their heart,” said Mary Graff of LifeCenter Northwest, a nonprofit organ procurement organization.

Each July, Baker sponsors a softball tournament in Krista’s honor. His wife sometimes attends but sometimes does not. She grieves her daughter in a more private way.

“They love and support each other a lot,” said their daughter Amanda Nelson of Spokane.

Her parents celebrate their blessings, Nelson said. Their first grandchild, Nelson’s son, Wyatt James, was born April 9. They visit with him several times a week.

“They call him ‘little man’ and ask him how his day was,” Nelson said.

Just as Baker once learned from his mother how you deal with inexplicable loss, his daughters now learn from his example.

“My dad has always amazed me by his consistent positive attitude,” said oldest daughter, Nicole Jonak of Portland. “He has a very strong faith in God that he relies on. He finds meaning in always asking himself how his experiences can help others and then acting on those ideas.”  

Baker, a real estate broker for Century 21, said he has reached the point of full acceptance about Krista’s death. He is relieved that she is “in eternal light” and no longer suffering.

“I miss Krista dearly, but you have to accept your reality,” he said. “I’m really focused on the 18 people a day who die. And the 110,000 who are waiting. I’m doing this for them.”