High Maintenance
High Risk
High Hopes

Cystic Fibrosis is the number-one inherited
killer of children in the United States. Yet
many Americans neither know about the
disease, nor the progress being made to cure it.

RUTH LITTMANN STAFF WRITER

Born Aug. 10, 1994, the Roth's brosis. Put simply, it is a disease
5.7-pound infant gained no weight of the body's secretory glands
for almost two months. His moth- which produce sweat, mucus,
er changed formulas nine times tears, saliva and digestive juices.
without success. In In CF patients, abnormally
attacks of vomiting, the baby re- sticky, thick secretions plug up the
jected every bottle. Unpredictably, lungs, intestines, ducts and pas-
he would stop breathing and turn sageways throughout the body. In
blue. Emergency 911 crews be- 17 months, little Ari has under-
came well-acquainted with the gone multiple surgeries to save his
Roth address. life.
In late September 1994, physi-
The severity of CF varies. Mark
cians diagnosed Ari with cystic fi- Levine, a Chrysler engineer, was

diagnosed at age 2, but he felt
healthy until his late teens.
David, his brother, suffered
from a more acute case. By 7,
the younger Levine was en-
tering the hospital every six
months for two-week-long
"clean-outs" or "tune-ups," pro-
cedures that restore breath-
ing.
"He was a source of
strength for me and a lot of
people," Mark says. "He nev-

Despite his illness, Ari Roth is an energetic child.

PHOTOS BY BIL L HANSE N

A t 16 months, Ari Roth seems too happy for a baby so accustomed
to life in a hospital.
"He doesn't know he's sick," says his mother, Lori.
Neither would passersby. Like a mini-steam engine on over-
drive, Ari runs around the house with his favorite toy. Not a truck,
not a baseball bat.
A plastic vacuum cleaner.
The choice makes sense to Mrs. Roth, who vacuums frequently to remove
dust that might cause infection in her son's lungs and kill him.
Ari suffers from cystic fibrosis, a disease that ultimately will destroy his air-
ways and intestines. CF strikes one in every 2,000 white babies in America. It
is less common among blacks, Native Americans and Orientals.
In 1966, the average life expectancy for CF patients was 11 years. Today, it
is 30. Although new treatments have improved the length and quality of life
for many of the afflicted, the disease remains the No. 1 genetic killer of chit=
dren in the United States.
Treating CF is a physically and emotionally draining process, part of which
involves "pounding" or "percussion therapy," requiring the care giver to sys-
tematically beat the patient's chest and back.
No cure exists for CF, and it always unnerves Dr. Steven Roth to hear well-
intentioned, but clueless acquaintances say about Ari, "Your son will grow out
of it, right?"
He won't. Not unless science comes up with a solution before it's too late.