He pioneered technology that fueled the Human Genome Project. Now his greatest challenge is curing his own son
Updated 11:02 AM ET, Mon May 13, 2019
(CNN)Multiple times a day, every day, Ron Davis sits with his head bowed, waiting outside his son's bedroom for a subtle signal that it's all right to come in.
He opens the door to the space where Whitney has spent most of the last decade.
Whitney lies motionless on a simple bed, his head shaved and his frame emaciated. He's fed by a tube directly into his stomach. His lips haven't uttered a word in five years.
Davis, who is 77, leads a lab that invented much of the technology that powered the Human Genome Project. Now he and his wife spend much of their days caring for their 35-year-old son, who is immobilized by myalgic encephalomyelitis, or chronic fatigue syndrome (ME/CFS).
Sunday is ME/CFS International Awareness Day. There is no cure. But Davis is leading a global push to root out the molecular basis of what is laying waste to Whitney and millions of other sufferers around the world so that scientists can better treat the disease.
Davis signals to his wife, Janet Dafoe, that Whitney is ready. She goes in and wipes her son's face. She pulls the covers up toward his head while he lies motionless.
She fixes an IV bag to a pole, which will drip water into her son's veins.
Davis sinks to his knees and takes Whitney's socks off. He clips his son's toenails. He washes his son's feet.
For the couple, it's a holy moment.
Davis led a revolution in science
Davis and Dafoe will celebrate their 50th wedding anniversary in July. Decades ago, they would have never predicted their current situation.
Now their everyday lives are consumed with caring for their son. At least one of them must be at home every day to attend to Whitney.
"My wife and I can't go away together anymore," Davis says. They used to go to the beach every year, but it's been more than seven years since they last went. On basically a single income, they struggle with finances.
"It has turned my life upside down in many respects. I decided to terminate everything I was working on before Whitney got sick," Davis says. "Everything is ME/CFS now. It's an emergency kind of effort."
The couple have spent their careers in and around Stanford University. Davis worked for decades in the school's biochemistry and genetics department while Dafoe, who just turned 70, works as a child psychologist. She has scaled back her hours to about five hours a week to care for her son.
After his PhD at Caltech, Davis completed his postdoc at Harvard studying under Nobel Laureate Jim Watson of "Watson and Crick" fame, who was immortalized in science textbooks for co-discovering the double-helix structure of DNA in 1953.
Davis joined Stanford's biochemistry department in 1972 as an associate professor and quickly began making a name for himself.
He co-wrote one paper that created a map with a new way to link genes to the traits they caused, which became a cornerstone of the field of genomics. It led Davis and his colleague to write a "proposal for a map of the whole human genome." The National Institutes of Health turned them down in 1979, saying their plan was too ambitious.
But Davis kept innovating, eventually accumulating more than 30 patents for technology he developed.
Finally, the world caught up to his vision. The $3.8 billion Human Genome Project began in 1990, with Davis' gene-sequencing technologies at its core. Completed in 2003, it launched a revolution in science. Handing researchers that foundational blueprint for human life gave biologists and doctors what up to that point was an unimagined power to diagnose, treat and ultimately prevent the full gamut of human disease.
Davis was shortlisted by The Atlantic, along with SpaceX founder Elon Musk and Amazon founder Jeff Bezos, as someone tomorrow's historians will consider today's greatest inventors.
The same prescient mind that dreamed up the Human Genome Project now devotes days to what Davis calls "the last great disease to conquer."
He may need all his brilliance to save his son.
But then his son got sick, and his priorities changed
Davis and Dafoe raised their two children in a quiet Palo Alto neighborhood. Each year they backpacked as a family in California's Sierra mountains, disappearing for weeks at a time.
"I carried Whitney up there when he was young," Davis says. On one of these trips 5-year-old Whitney impressed his father by walking nine miles in a single day. On another Sierras trip their baby daughter Ashley took her first steps at 5,000 feet above sea level.
"I haven't gone in 10 years now," Davis says. "I would love to do that with Whitney again."
By 2008, Whitney, was 24 and living in a small town in Nevada, knocking on doors for then-Sen. Barack Obama's presidential campaign.
But he often complained about being exhausted. A skilled photographer, Whitney captured images at Obama's inauguration in 2009, but even then he could no longer work a full day.
After years of declining health, seeing numerous doctors and not getting answers, Whitney was finally diagnosed with ME/CFS.
As his health worsened, he moved in with his parents in May 2011. He tried to keep working as a wedding photographer but soon gave that up because he needed a week to recover from shooting a single wedding. He soon became mostly bedridden.