Genes, Blood and Courage

This text recounts the work of a doctor who struggled to keep a six-year-old boy alive, while seeking a cure for thalassemia, a life-threatening inherited disease of the blood. Despite his reluctance to follow orders and being constantly hospitalized, Dayem - the misshapen, stunted boy - survived.

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David Nathan was stunned when he first saw Dayem Saif at Children's Hospital in Boston in September 1968. Dayem was then a six-year-old with the stature of an average-sized boy of two. He wore baby shoes on his tiny feet and was unable to walk without holding his mother's hand. His colour was dark yet pasty and his face horribly misshapen. The child was being ravaged by thalassemia, a life-threatening inherited disease of the blood, and one of the leading causes of disfigurement, disability and death in children worldwide. Without effective treatment, Dayem would almost cetainly die before his 20th birthday. "Genes, Blood, and Courage" is David Nathan's story of the 30-year struggle to keep Dayem alive. "Immortal Sword" is the English translation of Dayem's Arabic name, and under Nathan's care Dayem, indeed, seems immortal. Despite his continual reluctance to follow his doctor's orders and the repeated hospitalizations that result, Dayem - the misshapen, stunted boy - survives to become a handsome, successful businessman.
In "Genes, Blood, and Courage" Nathan goes beyond his struggles with this seemingly immortal patient to describe in detail the emergence, over the past 25 years, of an entirely new force in medical care called molecular medicine. As Dayem's case illustrates, this new area of human genetic research - in which Nathan is a leading clinical investigator - promises tremendous advances in the retinal diagnosis, prevention, and treatment of inherited disorders, such as thalassemia and sickle cell anaemia, and even of acquired illnesses such as cancer and infectious disease. "Genes, Blood and Courage" is a celebration not just of Dayem's triumphs but also of the tremendous accomplishments and potential of the American biomedical research enterprise in the late 20th century.