New book chronicles scientist Ron Davis’ efforts to save his son
TRACIE WHITE, a science writer at Stanford Medicine, has written a new book, The Puzzle Solver: A Scientist’s Desperate Quest to Cure the Illness That Stole His Son about RON DAVIS, professor of biochemistry and of genetics, and his efforts to save his son Whitney Dafoe. She wrote the book, which was published in January, with Davis.
Since 2004, Dafoe, once an accomplished photographer, has suffered from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The disease, which is incurable, is characterized by debilitating fatigue. Dafoe’s illness is severe, leaving him bedridden and incapable of even the most fundamental functions or interactions.
White talks about her experience meeting Davis, Dafoe and their family and writing a book about their lives in a recent article published in Scope, the Stanford Medicine blog.
The book has its origins in a 2016 article White was assigned for Stanford Medicine magazine. She acknowledges in the Scope article that the profound tragedy of the family’s story left her with a heavy heart the first time she visited the Davis home.
“My initial instinct to turn away from such tragedy slowly transformed into a desire to share this story of suffering and grief, of social injustice and of a deep belief in science,” she writes. “And, at its core, it’s even more than that. This is also a story of how a family’s love for each other has brought hope to so many.”
White writes about Davis’ efforts to understand ME/CFS, a puzzling and historically misunderstood disease. After a career spent pursuing genetic research and helping to map the DNA code, Davis refocused his efforts on helping his son. His subsequent discoveries have helped prove that ME/CFS is a biological disease. For many years, it had been dismissed as a psychological disorder.
In the Scope article titled “I wrote a book about a scientist’s journey to save his desperately ill son,” White writes that it was two years of doing research and interviewing others before she was able to talk to Dafoe.
“He still couldn’t eat or speak, but with a new medication and with great effort, he could communicate a bit using his hands and facial gestures,” she writes. “I returned every two or three months to sit and ‘listen’ to him communicate with his hands. I told him I would do my best to tell his story in a way that showed his personality. I’d write that he is funny and adventurous, and he sees beauty in small things. He is much more than a sick man, lying helpless in bed. He yearns to be off traveling the world.
“And he wanted me to know how he feels about his father’s determination to find a cure for him and other patients. On a soft brown blanket on his bed, using his finger for a pen, he spelled out the word ‘HERO.’ Then he smiled.”
Read the full article in Scope.