Johns Hopkins Magazine -- February 1998

FEBRUARY 1998
CONTENTS

AUTHOR'S NOTEBOOK

H E A L T H A N D M E D I C I N E

Destination: Hopkins
Author's Notebook
By Sue De Pasquale

The more time I spent with the Martinezes, the more I came to identify with their pain and the more I grew to admire them. Roberto and Maria traveled to Hopkins hoping against hope that the chronic cough that had beset their 2-year-old was not cystic fibrosis, but instead an allergy or some less serious illness. Watching little Eduardo scamper around on his sturdy little legs, I thought of my own 2-year-old son at home. Were I in the same position as the Martinezes (in a foreign country, awaiting a potentially life-altering diagnosis for my first and only son), I doubt that I would have allowed a stranger, a foreign journalist, to tag along at my side for three days. To be there when the news came in. And yet, the Martinezes did.

Even after they learned that their son does indeed have CF, that his life expectancy is now several decades less than before, that they stand a 25 percent chance of passing the disease along to any future children, Roberto and Maria were amazingly gracious to me. They kindly answered questions, and they allowed me to talk with their son's doctors and other caregivers. All this at a time that was probably the most wrenching of their lives.

My heart went out to them, and also to Hopkins patient liaisons Mary Anne Wood and Victoriana O'Keefe. Both women--in their quiet, sensitive way--were clearly a source of help and comfort to the Martinezes throughout their stay at Hopkins. And they'll continue to be in the months and years ahead.

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