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- June 12, 1995
- Vol. 43
- No. 23
A Family's Furious Race Against Time
To Save His Grandchildren's Lives, Ara Parseghian Joins the Hunt to Find a Cure for a Rare Genetic Killer
The kids, three of the four children of Michael and Cindy Parseghian, have a rare, incurable neurological condition that leads inexorably to paralysis and dementia. Children afflicted with the disease—called Niemann-Pick Type C—usually die in adolescence. Michael, a Cub Scout who takes karate and horseback-riding lessons, is the most seriously affected so far. His symptoms include vertical gaze palsy, which means that he can't easily raise his eyes. He has difficulty keeping his balance, and his speech is slurred. Marcia, whose passion is gymnastics, is just beginning to lose her coordination. Little Christa is so far symptom-free.
"The diagnosis is there; we can't do anything about that," says the children's paternal grandfather, retired football coach and TV commentator Ara Parseghian. But the man who led Notre Dame to two national titles during his 11 seasons as head coach from 1964 to 1974 isn't comfortable letting fate rule his world. Parseghian, 72, is determined to raise money for research toward a cure that will be found in time to save his son's children.
"Eighteen months ago," says Cindy, who quit as president of Tucson-based MCS Telecommunications to care for the children after Marcia's birth, "Mike and I would probably have told you we were the luckiest people in the world. Strong marriage. Four beautiful kids. We thought we were on top of the world." Mike and Cindy, now both 40, had met as students at Notre Dame, where he was premed and a third-string running back on his father's team. They married shortly after graduation in 1977 and four years later moved to Arizona, where Mike completed his surgical residency and joined an orthopedic practice, and where their children—Ara, 11, is the oldest—were born.
The first hint of trouble came in the fall of 1992, when 5½-year-old Michael was in kindergarten. "He just wasn't keeping up with the other kids," says Cindy. "He was falling a lot—a lot of bruises, a lot of bumps, stitches. And his handwriting was just atrocious. So we started looking for an answer."
That search, which included several misdiagnoses of Michael's condition—ranging from cerebral palsy to simple clumsiness—eventually took them to Columbia-Presbyterian Medical Center in New York City, where it was first suspected that Michael had Niemann-Pick Type C. The rare disease, which can occur when both parents carry the recessive gene, currently afflicts about 500 young Americans. It is caused by the body's failure to properly metabolize cholesterol, which eventually accumulates in the liver, spleen and brain and attacks the central nervous system. Last September, after Michael's condition was confirmed, the other Parseghian children were given skin biopsy tests. "The girls turned up positive," says Cindy. "We were all in a state of shock. It was a period of grieving."
The Parseghians soon discovered that because so few people suffer from the disease, very little research was being done on it. "We spent a lot of hours trying to figure out how to attack this," says Cindy. "It was just unacceptable to sit back and let the inevitable happen." They started the children on an experimental regimen consisting of a low-fat diet and cholesterol-lowering drugs. "It gives us an opportunity to prolong or delay the onset of symptoms and gives us a bigger window of opportunity to find a treatment and cure," says Mike.
They also called in the coach.
When Ara Parseghian retired from coaching in January 1975, he saw it as an opportunity to make up for lost family time. He and his wife, Kathleen, have three children—Karan, 46, Kristan, 43, and Mike—and nine grandchildren, ages 4 to 20. "Once I got out of coaching, I was able to spend time with the grandchildren that I wasn't able to spend with my kids during my professional career," he says. "The kids are so much fun when they're young and energetic, and so pure." The news that three of the nine had an incurable disease came as a terrible blow. "I would break down in my car when I was alone," he says. "I went through a period of depression."
By last October, though, the Parseghians had gone on the offensive. At a meeting with family and advisers in the coach's office in South Bend, Ind., where he still lives most of the year, they set up the Ara Parseghian Medical Research Foundation. Its goal is twofold: to fund research that will identify the gene responsible for Niemann-Pick Type C and to develop drug therapies to arrest or cure it. So far, aided by Ara's considerable fund-raising skills, the foundation has raised more than $1 million. It is now considering grant proposals.
"I think we really are close to identifying the gene," says Mike Parseghian. "At the worst case, 18 months or two years. Once you have the gene, you have a rational approach to treatment and a cure."
Dr. Michael Parmacek, a molecular cardiologist at the University of Chicago and one of the foundation's scientific advisers, agrees the gene may be beatable soon, but he has also tried to temper the family's expectations. "It would be optimistic to say we will have a cure any time soon," says Parmacek. "It is a long shot."
Even as they race to find a cure for Niemann-Pick, Mike and Cindy Parseghian are constantly reminded how fast the clock is running out. "Every time I see Michael fall because he's losing his balance," says Mike, "my heart stops—not because I think he's going to hurt himself, but because it reinforces the reality."
"It's always there—it doesn't go away," says Cindy. "It doesn't matter if it's someone's birthday. In fact, those are the hardest, because as you're celebrating their growth and maturity, you're also wondering, 'How many more do they have left?' "
MICHAEL HAEDERLE in Tucson
- Michael Haederle.
April 21, 2015
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