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In the last few years the research has started to identify potential drug therapies for the condition, and it has helped fuel Notre Dame’s Center for Rare and Neglected Diseases, which opened in 2008. They have raised $35 million for research on NPC, bringing new attention to an understudied area of cellular biology. Echoes: When the Irish got their fight backįifteen years after that bleak diagnosis in New York, many scientists say they are astonished at what Cindy Parseghian has accomplished as president of the Ara Parseghian Medical Research Foundation, named in honor of Michael’s father, the Notre Dame coaching legend.started karate classes, though no one knew from one month to the next if he would live long enough to reach the next belt ranking.

Christa, unusually small from birth, grappled with chronic pneumonia. Marcia, the first child in her dance class to master skipping, became sluggish as the condition sapped her motor abilities. They fought as their cheery, dark-haired children slid into the grips of the disease. “If we sat back and let the disease progress, we knew what was going to happen. “It was kind of like the lions protecting their cubs,” she says. Within weeks, Cindy Parseghian began a mission to support research on the disease, though it would mean starting a foundation from nothing. But the work had to start somewhere - doctors could not treat an ailment they did not understand. Scientists knew little about the disease, making the prospect for treatment more distant. In an emotional abyss, the Parseghians sought ways to fight what seemed like an implacable condition. We wanted to keep things normal for the kids, but we felt our whole world was falling apart.” “I couldn’t understand why God would do this,” she says. A search for meaning and peace would come later, but that night Parseghian felt numb, raw fury. had been diagnosed with a fatal condition called Niemann-Pick Type C ( NPC), and it was clear their two girls had the disease as well. It was a fact written into the children’s cells, as close as modern science can come to infallible prophecy.Ĭindy Parseghian remembers sitting that night in the kitchen of her friends’ Chappaqua home and cursing God. Within a decade or so, all three would be gone - Michael Jr., then 7, and his two younger sisters, Marcia, 5, and Christa, 3.

On a June day in New York 15 years ago, Cindy and Michael Parseghian learned that three of their four small children were fated to die from the same genetic disease.

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