JARED'S STORY: A Boy in a Bubble and How His Family Saved His Life by Barry Reisman

JARED'S STORY: A Boy in a Bubble and How His Family Saved His Life

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Jared Reisman was just one-and-a-half years old when the symptoms of his immune system disorder first appeared: initially mimicking a heavy cold, they eventually became so severe that he has had to spend eleven years as a ""bubble boy."" Unlike other well-known children living in such sterile, isolated conditions, Jared does not suffer from a non-functioning immune system--rather, it is theorized that he has an overactive response to dozens of allergens in the environment. Contact with pollen, for instance, leads to a life-threatening allergic response; he is safe only in an air-purified environment. (With the help of a portable air-cleansing unit that he wears over his head in a hood, Jared can be outside for four hours at a time.) Since he is also allergic to natural and synthetic substances such as antihistamines, the disorder cannot be medically treated. As told here by his father, Jared's story is one of a young boy's bravery and fortitude--but it is equally one of bureaucratic and physician collusion and insensitivity. Jared was initially diagnosed as being mentally retarded (some of his extreme allergy symptoms are lethargy and deafness); ensuing misdiagnoses included autism, And as the family made the rounds of Sacramento physicians, they came to be seen as cranks in need of psychiatric help to cope with their son's retardation. Schools refused to accept Jared; at one point, state social workers tried to have him taken from his parents. The correct diagnosis was stumbled on by out-of-town big guns, the treatment devised by Jared's parents. Reisman is understandably incensed at Jared's mislabeling and mistreatment (he is absolutely normal mentally and working ahead of his grade level under his mother's tutelage): ""this is the story of a little boy who lost his right to live. He can no longer see a doctor, attend school with other children. . . . ""A still unresolved medical mystery--shot through with justified grievance.

Pub Date: Oct. 26th, 1984
Publisher: Crown