A pioneer of the Human Genome Project seeks a cure for chronic fatigue syndrome to save his own son

Davis tells his wife, Janet Dafoe, that Whitney is ready. She enters and wipes the face of her son. She lifts the covers towards her head while he is motionless.

She lays a bag for intravenous infusion on a pole, which will drain water into the veins of her son.

Davis gets on his knees and takes off Whitney's socks. He cuts the nails of his son. He's washing his son's feet.

For the couple, it's a sacred moment.

Davis led a revolution in science

Davis and Dafoe will celebrate their 50th wedding anniversary in July. Decades ago, they would never have predicted their current situation.

Now, their daily lives are busy taking care of their son. At least one of them must be at home every day to attend Whitney.

"My wife and I can not go together anymore," says Davis. They went to the beach every year, but it's been more than seven years since their last trip. On a single income, they have financial difficulties.

"It disrupted my life in so many ways, and I decided to stop everything I was working on before Whitney became ill," says Davis. "Everything is ME / CFS now – it's a kind of emergency effort."

The couple has a career in Stanford University and surrounding areas. Davis has worked for decades in the department of biochemistry and genetics of the school, while Dafoe, who has just turned 70, works as a child psychologist. She reduced her hours to about five hours a week to take care of her son.

Davis joined Stanford's biochemistry department in 1972 as an associate professor and soon began to make himself known.

But Davis continued to innovate, eventually accumulating more than 30 patents for the technology he developed.

Finally, the world has caught up with his vision. The $ 3.8 billion human genome project began in 1990 with Davis' gene sequencing technologies at its core. Completed in 2003, he launched a revolution in science. The researchers realized that the Master Plan for Human Life gave biologists and physicians unimaginable power to diagnose, treat, and ultimately prevent the full range of human diseases.

The same thinking spirit that imagined the human genome project now spends days on what Davis calls "the last big disease to conquer".

He may need all his talent to save his son.

But then his son got sick and his priorities changed

Davis and Dafoe raised their two children in a quiet area of ​​Palo Alto. Every year they travel with their family to the Sierra Mountains, California, and disappear for weeks.

"I took Whitney there when he was young," Davis says. On one of these trips, 5-year-old Whitney impressed her father by traveling 15 km in one day. During another trip to the Sierras, their little girl Ashley made her first steps at 5,000 feet altitude.

"I have not been gone for 10 years now," says Davis. "I'd love to do that again with Whitney."

In 2008, Whitney was 24 years old and lived in a small town in Nevada, going door-to-door for Sen. The presidential campaign of Barack Obama.

But he often complained of being exhausted. An experienced photographer, Whitney captured images at the Obama inauguration in 2009, but even then, he could no longer work all day.

After years of declining health, many doctors without answers, Whitney finally received a diagnosis of ME / CFS.

While his health was deteriorating, he moved to his parents' home in May 2011. He tried to continue working as a wedding photographer, but quickly gave up this task because he needed a week to recover. from a single wedding. He quickly became bedridden.

Whitney has lost the ability to speak, which is a very small fraction of EM / CFS patients. Dafoe says that he was communicating with the family via SMS, but this skill is now lost too, because even the glow of a smartphone screen is too stimulating for him. The emojis of the heart that he sent to his carers are nothing but memories.

Eventually, he could no longer eat solid foods.

In one of his last texts to his parents, he wrote: "I'm sorry, I'm ruining your golden years."

To seek treatment, Davis recruited a team of dream researchers

During a life spent at the frontiers of science, Davis has collaborated with many accomplished researchers. He leverages these relationships to create a world-class team that he hopes will find the molecular basis of ME / CFS.

"I made phone calls and everyone I called said yes," Davis said.

As a result of outbreaks in the 1980s, some people termed "yuppie flu" as chronic fatigue syndrome.

But to make the kind of progress that his colleagues and he is considering, they need a lot more money.

They progress slowly but regularly

Patients with EM / CFS, such as those with multiple sclerosis and other diseases, fall into a spectrum. Some are still able to go to the office and work, while others are bedridden 23 hours or more a day.

At research conferences, Davis occasionally sits and chats with patients with ME / CFS for hours.

"I'm very friendly with them," he says. "It makes me feel that I have to solve this problem, but not in an arrogant way, I just know that I have to put all his energy into helping all patients, including my son."

Davis and Dafoe know that there is a living spirit in the weakened body of their son. Whitney is a Buddhist devotee and her house is littered with prayer flags. Dafoe thinks Whitney spends much of her day meditating.

When Whitney's younger sister, Ashley, is married, Dafoe pointed to the ring on his finger to offer his son the good news. The two brothers and sisters had been very close. Whitney did not speak but held her hands against her heart and cried with joy.

At Davis' laboratory, Whitney's blood samples are among the many sequencing machines, contributing to what his organization considers to be the most extensive study ever conducted on patients with EM / CFS.

This would not be the first time that Davis would devote himself to a problem that the scientific establishment would consider insoluble. "You have to look for these," he says.

He and his team have worked hard in recent years. One of their inventions, a "nanoneedle" for testing blood, emphasizes the need to find a single biomarker in the blood of patients.

A blood test that identifies a specific molecular abnormality specific to patients with EM / CFS has long been a stumbling block in researchers' quest for better recognition of the disease. Having one could stimulate drug development because pharmaceutical companies would understand what is wrong with patients.

He also wants to explore ways to prevent the disease. For example, he wants to understand why people with mononucleosis often develop EM / CFS.

These are just a few of the many things the Davis team is working on.

"We do not have enough money, so we have to set priorities," he said.

Davis went to Washington in early April for a symposium on EM / CFS. He almost did not make the trip because it would leave his wife alone at home, taking care of Whitney while she had the flu.

But she told him that he had to leave.

Taking care of Whitney is a daily ritual

Davis and Dafoe sometimes wait for hours in front of Whitney's room, peering through a keyhole to see if he is well placed in bed, indicating that it is okay to enter. Words being no longer an option, they must interpret Whitney's postures and occasional hand signals.

Six times a day, every day, they perform this ritual, silently, conscientiously, away from the eyes of the world.

They start around 2:30 pm, first connecting the Whitney IV. When next entering his room, they connect the pump to the "J-tube" that sends the nutrients directly into the stomach of their son.

At the third visit, they wash and clean the small plastic containers located next to Whitney's bed, which he uses as urinals. Then they come back to put the urinals on Whitney's belly when he's ready to use them again. During their last visit, often around 2:30 am, they will put ice on Whitney's stomach to help soothe her excruciating digestive pains.

"I have the impression of living in a different world." It's hard to say anything when people ask, "How are you?" "Dafoe said. "Our world has just been consumed by a chronic disease."

There is a disciplined intentionality behind their movements. For Whitney, the slightest deviation in their procedure can be devastating.

"His cognitive processes are not working well," says Dafoe. She and her husband are wearing a plain shirt without lettering when they are in Whitney 's room because the little energy his brain needs to process a word can cause it to fall. They even use tape to cover the labels of Neosporin tubes.

Whitney suffers from severe stomach pains, which prevent them from putting more food in her feeding tube.

Dafoe wants her husband to get enough sleep to stay cool and focused on finding the disease. That means she often helps Whitney until 5 or 6 in the morning.

At 5 pm she is back to take care of her son.

They hope that the suffering of their son can have a greater purpose

"I had a Ph.D. It was difficult," says Dafoe. "I climbed mountains, it was difficult."

But she says that supporting Whitney's disease is the most difficult thing she has done in her life, "by a factor of thousands".

A simple truth guides her. "He is my son, I just love him."

Dafoe receives messages from ME / CFS patients around the world who say they are inspired by her husband and alarmed by her son's serious condition. She says she feels like a mother to these people, many of whom are suicidal – a rational response to a life spent above death.

Many tell him that Whitney is their northern star. They say that if he can continue to live in hell year after year, their suffering must be bearable too.

"It saves lives," says Dafoe. "Just lying there."

Almost all communication between her and her husband with Whitney is done by pantomime gestures. If he wants more than something, he will hold his hands together and then separate them.

But from time to time, the fog dissipates a bit and Davis and Dafoe can speak out loud more complex ideas to Whitney. A few months ago, they told him how much his father had become a reference in the field of scientific research on his illness.

"He was really excited about it," says Dafoe.

Whitney hit the air like a boxer, indicating that he intends to fight.