Book chronicles Lakewood family’s loss of two children from rare liver disease

A longtime Lakewood resident has chronicled the challenges of losing a daughter and then a son to the same liver disease, and the journey of faith that carried his family through it.

“When you go through a trial like this you don’t stay the same; you either get closer to God or you run from him,” said Danny L. Deaube, whose book “I Will Praise You in the Storm” was released in November.

The storm began when their second child, Stephen, was diagnosed as an infant with a rare form of chronic active hepatitis called familial intrahepatic cholestasis (FIC) that attacked his liver. After their third child and only daughter Holly was born, they learned she too carried the disease.

Stephen, 8, and Holly, 4, visiting Disneyland with their parents in 1983. (Submitted photo)

Holly endured three liver transplants but became so infected by the third transplant that when a fourth liver was found for her, the Deaube family chose to decline it so that it could be used to save another transplant patient’s life.

Holly died at age 8, in the winter of 1987. Stephen was 12.

Almost two decades later, Stephen died as well, likely because of a virus contracted from a blood transfusion during a liver transplant.

Deaube offers a perspective of burying not one child, but two.

“God is good, God is in charge and he doesn’t make mistakes. God was good before our kids passed away and he’s still good now.”

Deaube and wife Bonnie lived in Lakewood for 35 years where they discovered their faith, Danny working as a bricklayer and Bonnie as a behavioral aide for the Los Angeles County School District. The were high school sweethearts at Jordan High School.

“We became born-again Christians when Stephen was born and we began having these storms of life,” Deaube said.

They both retired in 2007 and moved to Monroe, Ore., a town of 600.

While he completed the book rather quickly for someone who doesn’t consider himself a writer, there were a number of obstacles that Deaube had to overcome before completing the book in 2011.

“When I first started writing, I didn’t think I’d remember all the dates. It was hard to go back and remember some of the details. Normally you don’t talk about some instances, but I thought it was important to share what happened during that time. Some of it was very graphic and intense.”

The Deaubes live on 10 acres in Monroe with their 20-year-old son, Dustin, who was born after Holly died. He is not a carrier of the disease, nor is brother Donald, 44, who lives in Lakewood with his wife and four children.

“What we try to do is promote organ donation. Most people that are waiting for organs die waiting, as was the case for Stephen,” Deaube said. “There’s such a need for organs, and there’s just not enough to go around.”

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