When a parent outlives a child, once is heartbreaking.
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.
her best grande jetÈs and arabesques with the help of two other
girls who carry the petite ballerina, who needs a wheelchair to
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."
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.
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.
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
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.
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.
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.
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,
"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."
3, Mike and Cindy Parseghian will celebrate their 25th wedding
anniversary in a place they never imagined would become their
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
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.
were born healthy. They were bright and active. All would take
But in August
1994, their lives were turned inside out.
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
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.
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 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
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.
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.
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.
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.
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."
from Sunrise Elementary School, where the Parseghians attended,
have held penny drives, and to date have raised $60,000. That's
6 million pennies.
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."
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
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."
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.
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.
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.
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.
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.
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."
call Marcia a fighter, and they say helping her makes them forget
about their problems.
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."
the reporter at email@example.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.