He pioneered technology that fueled the Human Genome Project. Now his greatest challenge is curing his own son

Ron Davis

 

By Ryan Prior, CNN.

 

(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.

 

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