Mercies in Disguise by Gina Kolata

Author:Gina Kolata
Language: eng
Format: epub
Publisher: St. Martin's Press

Part II

Amanda Baxley: The Next Generation

11

A Life Transformed

On that late afternoon in February 2004, on that awful day that Buddy learned that he did indeed have GSS, Amanda looked at the waning sun glinting off the lake behind her parents’ house and was hit with the stark reality of her father’s disease. Her illusions, her irrational hopes that her father would somehow get better, had been stripped away in an instant when Buddy read aloud from the letter with his test results.

How unfair, she thought. She and Buddy had clashed for so long during her rebellious high school years. She hadn’t even liked him very much. But in this past year things had changed. She had grown up, gotten serious about school. And she and her father had developed a special bond.

Buddy called Amanda at least once a week just to hear her voice. “Moon, how are you?” he would say when she picked up the phone, using her childhood nickname. They’d talk about her classes and he’d always ask if she had met a special guy yet. She was studying biology and planned to be a doctor. That made him so proud.

Now, just as she and Buddy had finally gotten close, Amanda and her father were going to be ripped apart by this disease.

And although it seemed almost selfish to think of it at a time like this, Amanda worried about her own future. As a premed biology major she knew how inheritance worked—each gene is present in two copies. A child inherits one copy of each gene from each parent. Buddy had one mutated prion gene and one normal one, but that one mutated gene was enough to cause the disease. Amanda knew there was a fifty-fifty chance that the prion gene she inherited from her father was the mutated one. That meant there was a fifty-fifty chance she would get GSS.

That day marked the start of a separate life for Amanda—another story. Before, she was a carefree college student, social chairwoman of her sorority, studying hard all week and partying every weekend. After, she began a different routine: study all week and then climb into her lime green Volkswagen Beetle—her parents’ high school graduation present—and drive two and a half hours to Hartsville to see her parents for the weekend, helping Kathy care for Buddy. She would listen to Louis Armstrong’s version of “What a Wonderful World”—her dad loved that song and it always reminded her of him. And she would be prepared with anecdotes to amuse him and medical questions from her courses that he could help her answer.

She soon dropped out of her sorority—she no longer fit in with the other girls, whose carefree lives suddenly seemed frivolous. Life had abruptly become a lot more serious for her.

When the weekend ended, Amanda always felt relieved to be leaving that house of sorrow. Back in her car, she’d play the Louis Armstrong song again. And she would be reminded of the shadow over her life.

She and

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