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In September 1994, Knapp was on his way to breaking the state record for career three-pointers when his heart stopped during a pickup game at Woodruff High in Peoria. He was revived, had an ICD placed inside his chest and two months later spurned more prestigious programs to accept a basketball scholarship to Northwestern. When he arrived in Evanston, however, the school's doctors, concerned that he might have a fatal heart condition, declared him ineligible. Knapp's left ventricle was slightly enlarged, and cardiologists were divided on whether he had the disease. Knapp himself doubted that he had HCM and sued the university for the right to play. Keeping him off the court, Knapp argued in his lawsuit, violated the 1973 Rehabilitation Act, which protects "otherwise qualified individuals" from discrimination based on a disability.
Knapp won in federal court, but Northwestern got the ruling overturned by the U.S. Court of Appeals for the Seventh Circuit. The court acknowledged that Knapp could play college ball, but that Northwestern also had the right to heed its doctors and to prevent him from potentially risking his own death at its facilities. Though the university honored his scholarship, Knapp, who sat out for two seasons during the litigation, transferred to Northeastern Illinois, then to Division II Ashland (Ohio) University. He still ponders what might have been. "I've played against guys who went to the NBA, like Brian Cardinal and Stephon Marbury," Knapp says, "and I was at that level."
Since Knapp's ordeal, the use of implanted defibrillators has become more common in the population at large, and doctors have permitted some athletes with ICDs to compete. In January 2006, Washington guard Kayla Burt, who has Long Q-T syndrome, a genetic heart disease that, like HCM, is treated with an ICD, was sitting on the bench in a game against UCLA when her device fired. "She thought someone came up behind and punched her in the head," recalls team trainer Jenn Ratcliff. The shock "usually gets a 10 out of 10 on the pain scale from patients," says Dr. Mark Estes, an electrophysiologist and director of the New England Cardiac Arrhythmia Center. Burt, who had nearly died on New Year's Eve 2002, when she went into cardiac arrest, gave up playing for good that night. "The device worked, which is good, but not exposing yourself to potentially lethal cardiac arrhythmias is a good choice," Estes says, adding that an ICD's wires are not made to withstand the strain of sports. "The leads can be damaged," he says. "I had one 20-year-old woman who destroyed a lead just doing aerobics."
How well implanted defibrillators hold up during sports is one of the many questions surrounding HCM. There are still mutations to find. There is still much that is not known about the progression of the disease—when and how the cellular disarray develops, for example—largely because a live heart can't be put under a microscope. There is still no explanation for why Eileen Kogut's two brothers died but she, with the same HCM mutation, leads a normal life. Says Salberg, "Somewhere between screening every kid in America for a couple of billion dollars and not doing anything lies the right answer."
DECARLO POLK'S mom, Tommie (Lady) Polk, knows a lot about HCM now, but she does not have any more children to lose. DeCarlo was her baby, and she clings to his memory as if trying to keep a balloon from drifting into the sky. There are mementos around every corner in her yellow clapboard house in Durham: in the family room DeCarlo's first football shoes, burgundy-and-yellow Redskins sneakers that fit in the palm of Lady's hand; in his bedroom the folded New Orleans Saints replica jersey with Reggie Bush's number 25 stitched on the back that he never got to wear. She keeps the bedroom door locked and the fan continually running. "I can smell him when I'm in here," she says.
If only she had known about HCM, Lady Polk says. If only the woman down the street had spoken up when her son had died from the disease, Lady would have gladly paid for the tests to make sure her baby was safe. As for his football scholarship? She never counted on that anyway. "DeCarlo could have carried water for the team," she says. "He wasn't born to play sports."
DeCarlo was more than Lady's only son; he was her guide in a noisy world. In the last few years Lady's hearing has deteriorated; nearly deaf, she had to leave her teaching job. "I couldn't keep up with kids how I knew I should," she says. Nick Knapp had to adjust to life without basketball, and Lady is just beginning life without something far more precious. Most of the time she is alone, in her silence.