Family races for cure to deadly disease

Family races for cure to deadly disease

News 14 Carolina (Charlotte, NC)

By: Martie Salt, News 14 Carolina

On the field, famed Notre Dame coach Ara Parseghian
was a winner. But there was one fight he couldn’t win
— three of his four grandchildren were diagnosed with
a deadly disease.

One of those children, Marcia, has a fatal disease
that will kill her. She knows because it killed her
older brother and her little sister.

Not knowing how to deal with their daughter’s looming
death, Mike and Cindy Parseghian created a foundation
to help other families dealing with similar

“We were hoping it would have a big impact on our
children’s lives,” Cindy said about the organization.

Niemann-Pick Type C disease usually affects children
of school age by interfering with their ability to
metabolize cholesterol.

The Parseghians know that time has run out to save
Marcia from the genetic disease Niemann-Pick Type C,
which is also known as NPC. It has destroyed her
ability to metabolize cholesterol, robbed her of her
ability to walk, talk and even move her eyes.

NPC is fatal — a diagnosis Cindy first heard for her
son Michael.

“He just couldn’t quite keep up with the other kids on
the playground,” she said.

After a year of tests, doctors finally found out what
was wrong.

“All of a sudden … we have not just Michael that is
seriously ill, but we have the potential for having
the two girls (who are sick),” Cindy said.

All three tested positive for NPC.

“We screamed, we yelled,” Cindy said. “I’m not
embarrassed to say that I cursed God.”

Then Cindy and Mike turned their anger into something
positive and started a foundation. Although research
did not help their children, the gene that causes it
has been discovered. Now the race is on for a cure.

“You see this one little toddler, of 1 year old, that
we know has the disease, yet is not showing signs, and
I have a real strong belief that we can make an impact
on that child’s life,” she said.

She and her husband say they pray other children will
be saved because of their work and the resulting

Ara Parseghian Medical Research Foundation, a
volunteer, nonprofit corporation, funds research
projects that will lead to a treatment and cure for
Niemann-Pick Type C disease.

Web Journalist: Megan Butler

On the Net: Ara Parseghian Medical Research Foundation