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COMMERCE, MI 48382

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CYSTIC FIBROSIS

page H21

while he lies in different positions. in college. These days, in his car
The pounding helps dislodge the — to and from work at Chrysler
mucous deposits, which already — he inhales an aerosol which
have been loosened up by med- loosens the mucus in his lungs.
Added to more therapy at home,
ications.
After a fit of struggling and-cry- Mr. Levine estimates spending
ing, Ari usually settles down and about two hours a day on a well-
accepts the treatment. Mrs. Roth ness routine.
"It takes a big chunk of your life
cuddles and comforts him. There's
no choice. If Ari is not calm and away — or so you might think.
somewhat relaxed, the therapy The doctor, basically, left the
choice up to me. It's a tradeoff.
will have no effect.
The family members sing to What quality of life do you want,
him and try to distract Ari with versus how much therapy? I could
funny faces and toys. In a small do therapy 24 hours a day, but I
don't want to. I'd rather live a lit-
way, it eases the pain.
"There were months when we tle."
couldn't stop crying. But after a Living A Little Longer
In 1966, the median life span
while, we realized that this is just
a way oflife," Mrs. Roth says. "It's was 11. It leaped to 19 in the '80s.
like taking a vitamin pill. It's just Now, CF patients live an average
something we have to do every of 30 years.
Richard Simon, associate pro-
day."
The Roths' goal right now is to fessor of internal medicine at the
keep Ari's lungs infection-free, University of Michigan Medical
thus preempting the formation of School, serves as director of the
scar tissue. The more scar tissue, Adult Cystic Fibrosis Center in
the harder it is to breathe. And Ann Arbor. He attributes the in-
the harder it is to breathe, the creased rate of survival to better
more the heart must work, risk- treatments.
"We're well down the path of
ing cardiac arrest.
"This is going to be lifelong," understanding what's going on,"
says his father. "As Ari becomes he says. "The disappointment is
- an independent adult, he'll have that our understanding hasn't im-
to learn to do his own treatment." mediately translated into a cure."
In 1989, researchers at the uni-
The Roths especially worry
about adolescence when Ari — versities of Michigan and Toron-
like most children — might rebel to isolated the gene for CF.
against protocols designed for his Afterward, screening tests became
welfare. However, his parents available.
CYSTIC FIBROSIS page H24
can't dwell on future
mights and maybes. To-
day's uncertainties require
far too much attention.
They've replaced car-
peting in their house, lest
Ari inhale dust mites,
which could kill him.
Members of the family * The Cystic Fibrosis Foundation's
must wear masks if they chapter in Michigan will hold a March
feel like they're coming "Tennis Auction Ball," a May 'Walk-a-
down with a cold. Clean- Thon" and summer golf tournaments.
ing is a constant activity Mother major fund-raiser, hosted by
— everything from vacu- Lori and Steven Roth and Claire Cham-
uming the rugs, washing bers, will most likely be held at the
stuffed animals three Wabeek Country Club on Sept. 7, 1996.
times a week and replac- The benefits are open to the public. Pro-
ing the tubes on Ari's med- ceeds will go toward research. The
ical equipment.
Foundation is looking for committee
Friends and relatives workers and sponsors. For additional
have been supportive, and information and for a calendar of more
Ari's brothers lend a hand. events, call (810) 524-CURE (2873).
In fact, Benjamin Roth's
eighth-grade graduating Children's Hospital, Pulmonology
class at Hillel Day School Department (313) 745 5541.
raised $500 from their hot-
dog lunch and bagel sales University of Michigan Hospital
for the CF research center 1 800 962 3555.
at the University of Michi- Cystic Fibrosis Foundation,
gan.
Metro Detroit (810) 524 CURE
Mark Levine, of South- (2873).
field, became more proac-
tive in administering his Cystic Fibrosis Foundation, Na-
own therapy when he tional Office 1-800-FIGHTOF (344-
joined a CF support group 4823).

Facts And
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