•(Below) An article recently published in The Arizona Republic about the Parseghian Family and Foundation.

AUGUST 25, 2002 -
Rare disease ravaging family
Parseghian Foundation fighting back
By Craig Harris - The Arizona Republic - Aug. 25, 2002

TUCSON - When a parent outlives a child, once is heartbreaking.

Twice is unbearable. A third time is unthinkable.

Yet on this hot August afternoon in a sticky central Tucson dance studio, Cindy Parseghian refuses to be consumed with the grief that likely awaits her, again. In the past five years, she has buried two children who never reached junior high.

On this day, she affectionately watches her 13-year-old daughter, Marcia - her third child afflicted with a rare disease for which there is no cure.

Marcia performs her best grande jetÈs and arabesques with the help of two other girls who carry the petite ballerina, who needs a wheelchair to get around.

"I think about the kids I have lost every day. But you get to a point where you have to focus on what they left us, instead of what they missed," Cindy says. "We have made an effort as a family to concentrate on the little dreams she has. Then you focus on the little achievements."

Cindy and her husband, Mike, have dreamed of finding a cure since 1994, when they learned that all but one of their four children had Niemann-Pick Type C, a genetic disorder that produces a defective protein in the cells and damages the nervous system. Shortly after the shock, they went public with their story and created a foundation to find a cure.

Cindy, an accountant, would use her business acumen to run the non-profit group, while Mike, an orthopedic surgeon, would create a medical advisory board. To serve as fund-raiser, they turned to their children's famous grandfather, Ara Parseghian, who from 1964 to 1974 coached Notre Dame to two national college football titles.

"I can't think of anything that even comes close to the emotional devastation we have had since we first learned of this," Ara said from his home near South Bend, Ind. "But we are trying to do something about it. We will not save our grandchildren. But we will try to find a cure and spare those diagnosed in the future."

As many as 1,000 children in the United States have the disease, and most will die before they turn 15. Problems can develop during the preschool years, and seizures become common. The ability to walk and swallow slowly are diminished, and simple childhood pleasures like tying shoes, eating ice cream and riding a bike can become impossible.

When the Parseghian children were diagnosed, the disease was so unknown just two laboratories conducted research on Niemann-Pick Type C, which causes an accumulation of cholesterol in every organ, including the spleen, liver and brain.

Today, the Ara Parseghian Medical Research Foundation funds 23 research labs, including one in Finland and one in Japan. In the foundation's first four months, it raised $1 million. Since it opened, more than $17 million has flowed in and at least 90 percent of what is raised has gone to research laboratories.

Dr. William Garver of Tucson, one of the researchers, believes that if they can find a cure, it may lead to discoveries about Alzheimer's and heart disease.

However, the process has been slow and victories few.

In July 1997, the National Institutes of Health discovered the gene that causes Niemann-Pick Type C, but it came almost four months after Michael Parseghian, four days from his 10th birthday, died in his sleep. Since then, there have been no major breakthroughs. Last October, the Parseghians lost their youngest child, 10-year-old Christa, to pneumonia.

"When I came here seven years ago, I thought we would have this beat in five years," said Garver, a molecular genetics researcher at Steele Memorial Children's Research Center. "I wasn't expecting this. I knew the disease was serious. But I thought we would have made progress, and I'm frustrated we have not."

Came here on whim

On Sept. 3, Mike and Cindy Parseghian will celebrate their 25th wedding anniversary in a place they never imagined would become their home.

They came to Tucson on a whim in 1981, when Mike was looking for a place to do his residency. They had been married four years, after meeting at Notre Dame as juniors and then attending graduate school at Northwestern University.

Cindy figured the Southwest would be another stop in their careers, but then they had Ara, whom they named after his grandfather. Cindy wanted more children. Three more.

All four were born healthy. They were bright and active. All would take karate lessons.

But in August 1994, their lives were turned inside out.

Michael had trouble with his balance and was unable to raise his eyes without raising his head. A specialist at Columbia University treated him. A doctor told the Parseghians that Michael likely had Niemann-Pick Type C.

One of the symptoms was that he had a large spleen, just like the girls. All the kids were tested, and by October they knew all but their oldest, Ara, were afflicted. At the time, Ara was 10, Michael was 7, Marcia was 5, and Christa was 3.

Garver said the odds that three kids in one family would be afflicted are remote. He added that just one in nearly 350 adults carries the disease, even though he or she may show no signs. The chances were 1-in-4 that children of two carriers like Mike and Cindy, who didn't know they had it until their children were diagnosed, would be afflicted. For the Parseghians, those numbers were reversed.

"It's rough. It's really rough. There is a time once every day where you can't deal with it anymore. But you have to somehow," said the younger Ara, an honors student who will enroll this week at Princeton University. "There is a lot of love in this family that gets us through."

The older brother said some of his favorite times with Marcia are playing games like Uno, Go Fish or a dice game called Pass the Pigs. He also loves holding her and watching videos, although he jokes that he has watched more of her Backstreet Boys and Mary Kate and Ashley videos than most college-bound boys have.

"We do anything we can to keep Marcia involved," Ara said.

Generous friends

The foundation, with just one full-time employee and two part-timers, is headquartered in the Tucson foothills. Costs are kept to a minimum, thanks to a pool of 100 volunteers, including the Parseghians, and some influential, generous friends.

Airline Automation, an airline security company, donated a 1,500-square-foot office and covers the foundation's operating expenses. The band Chicago, whose manager played football at Notre Dame for Parseghian, has donated $500,000 over the past seven years. Gospel and country singer Amy Grant, who learned of the family's plight from a magazine story, has performed four times for free at the annual fund-raising gala in Tucson. University of Arizona basketball coach Lute Olson and football coach John Mackovic also are major supporters, as is supermarket owner Eddie Basha.

The elder Parseghian has used his Notre Dame and broadcasting ties to bring in former players, ex-President Ford and TV personality Regis Philbin, while family friend Joe Garagiola of Scottsdale has invited his former colleagues from the Today Show and baseball greats to help raise money.

Garagiola, a friend of the elder Parseghian since the 1970s when they would winter in southern Florida, said he cannot comprehend the family's losses. "That is one of the reasons the volunteers do what they do. . . . This is more than a golf tournament," said Garagiola, who built a career as a broadcaster after his baseball-playing days in St. Louis. "This one becomes a part of you."

Classmates from Sunrise Elementary School, where the Parseghians attended, have held penny drives, and to date have raised $60,000. That's 6 million pennies.

"Our kids have been so loved," Cindy said. "At first, I was so worried that a child would come up to my girls or my son and say, 'Oh, you are dying.' But that has never happened. I have seen a side of human kindness that no one has seen."

Other kids lend hand

It is lunchtime at Orange Grove Middle School, and Marcia is sitting with her special-education teacher, Jennifer Argraves, in the cafeteria. She arrives a little before the other kids. Within minutes, the table is surrounded by eight other teenagers, and a couple of girls sit close and hold Marcia's hands. Alex Ricker, a friend since kindergarten, teasingly calls her "monkey girl"; she mouths "coconut boy" to him. The daily ritual has gone on since third grade.

"We have a lot of fun with her. It's fun to make her laugh," said Alex, an eighth-grader. "I like to hang out with her a lot and talk with her. . . . Just doing anything a normal friend would do."

The kids, who munch on sandwiches and hot dogs, appear unfazed as Marcia is fed through a tube that's attached to her stomach. Alex said most of the kids don't even notice.

The tube was inserted a year ago, when Marcia had difficulty swallowing. Since then, she has gained 10 pounds. But the girl with wavy black hair, big brown eyes and ruby red lips still is tiny for her age at 65 pounds.

About 18 months ago, Marcia lost much of her ability to speak when her anti-seizure medicine was changed. Today, she mostly uses hand motions to respond to questions.

Each morning, she uses a nebulizer to help her breathe. After she wakes up, a special vest is placed on her, and it gently vibrates her to keep liquid from pooling in her lungs. She also has weekly physical and speech therapy.

The family has kept Marcia involved in activities that other teenagers enjoy. She studies ballet at the Dance Infusion studio, where instructor Holly Bell leads Marcia and a half-dozen girls who spin and kick across the floor on Thursdays. Marcia, who began taking lessons at age 3 and has been in 10 recitals, attempts to do the same while being held by Alix Deymier, 18, and Rachel Juarez, 13.

"They love her, and it teaches them so many things," Bell said of her student helpers. "But it is hard for the two girls who help. They are helping her and seeing her die. It breaks your heart, but not to do it breaks your heart."

The girls call Marcia a fighter, and they say helping her makes them forget about their problems.

"You can be having the worst day in the world, and she will have this big smile and a big hug for you," Juarez said. "She is the most determined person I know."

Reach the reporter at craig.harris@arizonarepublic.com or (602) 444-8995. The Ara Parseghian Foundation can be reached at 3530 E. Campo Abierto, Suite 105, Tucson, AZ 85718; (520) 577-5106.

Contributions will be gratefully accepted to the Jessica Leoni Trust made out to the Ara Parseghian Medical Research Foundation and/or the Jim Lambright Medical Research Foundation. Both Foundations are non-profit corporations that fund research projects to find a cure for Niemann-Pick Type C Disease. Your donation is tax deductible. You may send your contribution to:

The Jessica Leoni Trust
P.O. Box 83744
Los Angeles, CA 90083-0744

We will forward your donation. You may telephone us at (310) 649-6125.

The FightForJessica web site was created by
A Harebrained Production™ a service of Hired Hand Design®