COMMUNITY VIEWS

A Simple Blood Test For Ashkenazim

Canavan disease.
our story on familial dysau-
I had never heard of it but it scared
tonomia ("Slow Improve-
me. I thought to myself, "We are both
ment," Jan. 21) struck a
Jewish and I haven't been tested for
familiar chord. My husband
this." Like Tay-Sachs, Canavan is fatal.
and I had been planning for years to
It is a degenerative neuro-
have a baby. We were married
logical disorder that causes
in 1996 and decided that the
profound disabilities — the
summer of 1999 would be
inability to walk, talk and
perfect to start trying.
eventually swallow.
So, being the planner that
I could not get the Randells
I am, in December 1998, I
out of my mind.
informed my gynecologist so
The following week, I
she could direct me. She rec-
had my monthly obstetri-
ommended my husband and
cal checkup. I asked my
I be tested for Tay-Sachs as
doctor to test me. My
we are both Jews of Ashke-
CLAIRE
obstetrician, also Jewish,
nazi descent. For extra pre-
asked why I wanted to be
GROP MAN
caution, I was also tested for
tested for such a thing. I
Special
to
HIV, rubella and chicken pox
insisted and my blood was
the
Jewish
News
immunity (I never had it).
taken for a Jewish Triple
All tests were negative; I
Screen. At this time, I was
opted for the chicken-pox
14 weeks pregnant and, to be hon-
vaccine just to be safe. I thought I was
est, more worried about Down syn-
being cautious and well prepared.
drome and my upcoming Alpha-
By September 1999, I was pregnant
Fetoprotein test. After all, Canavan
and elated! Then, I saw the Nov. 26
was
so rare, right?
NBC Dateline television program and
Five weeks later, my OB called me
it changed me forever.
at home. It didn't even sink in for a
There was a young Jewish couple,
minute that this was not normal pro-
the Randells from Chicago, and they
cedure. He informed me that I was a
told a story of how something was
carrier for Canavan disease and that
very wrong with their baby. I was
my husband needed to be tested right
glued to the screen; I had to know.
away.
Their son had been diagnosed with a
I was in shock and started to cry as
rare Jewish genetic disorder called
I called my husband. I kept thinking
to myself that if he was also a carrier,
we could have a baby with a fatal dis-
Claire E. Gropman lives in Farming-
ease! I cried for two days.
ton Hills.

y

If my husband were a carrier, too,
we would have a 1-in-4 chance of
having an affected baby. We would
have to decide whether or not to
continue the pregnancy. The "what
ifs" plagued my mind. Would I raise
a child with a fatal disease? Could I
possibly abort at this point? I was
already 19 weeks pregnant. This was
the first time in my life I felt pun-
ished for being a Jew.

I do feel very
blessed that our
baby will be
okay. I also feel
as if I have been
given a mission
to educate
others.

We were able to rush the results
and in one week found out my hus-
band is not a carrier. Oh, what joy!
In that week, I found out a lot
about Canavan disease and even got

in touch with the Randells in Chica-
go.
One of every 40 Jews of eastern
European descent (that's 90 percent of
us) will be a carrier for Canavan. One
birth to carriers out of 6,400 will be
an affected child. For Tay-Sachs carri-
ers, the odds are 1 in 27. In 1 out of
2,900 births, the child will have Tay-
Sachs.
I now know something about
myself that I need to pass on to my
brothers, and to our children, when
they grow up and want to have fami-
lies. And I know this because of a TV
program.
I do feel very blessed that our baby
will be okay. I also feel as if I have
been given a mission to educate oth-
ers.
Please be aware that the American
College of Obstetricians and Gynecol-
ogists recommends that Jewish couples
of Ashkenazi descent who are in the
same risk group for Tay-Sachs disease
also be screened for Canavan disease.
Please ask to be screened when you
and your spouse are considering preg-
nancy. ❑

For information on Canavan
sease, or to get involved with
local organizations, e-mail Claire
Gropman at Curtis111@aol.com
or access the Canavan Research
Fund Web sire, www.canavan.org

LETTERS

cation

son Levin, who wrote
s letter "Check The
Of The Statistics," isP res-
Michigan Citizens for
gun Control, a Birming-
rn-based organization.

Speak Up Against
Authoritarianism

z>

2/25
2000

32

For Jews, living in the United States
has provided unprecedented levels of
freedom and prosperity. For that we
must all be thankful. We, our parents,
grandparents and great-grandparents
came to the U.S. because it offered the
promise of escaping from authoritari-
an regimes that restricted how we

could earn a living, kept us in poverty,
and how, even, we could practice the
faith of our fathers.
The Jewish News editorial board,
however, arrogates the same authori-
tarianism from which we had been
trying to escape for centuries in recent
editorials ("A Civil Injustice," "Balanc-
ing Austria," both Feb. 18).
"Flying the Confederate battle flag
from public buildings is a public
affront," one editorial states, referring
to the fact that atop the South Caroli-
na statehouse the Stars and Bars waves
proudly. Too bad. The people of
South Carolina, at the urging of then
governor Ernest Hollings (who is a
Democrat, by the way), placed that
flag there in 1963. It is up to the peo-
ple of South Carolina, and no one
else, to make the decision to remove
it. It is not the place of the Jewish

News to pontificate on the worthiness
of such a symbol.
The editorial goes on to ask, "Can
you imagine if Germany decided to fly
a flag with a swastika over the capital
in Berlin?" Again, if this were to
occur, it would be up to the people of
Germany to deal with it. The editorial
board of the Jewish News can wring its
liberal, statist hands until they are raw;
it would make no difference in the
rightness or wrongness of such an act.
The second editorial states, "Joerg
Haider, the leader of the misnamed
Freedom Party, may be no Adolf
Hider, as several prominent Jewish
leaders correctly say. But the Clinton
administration is right to treat the
ascension of his party — by popular
vote, not putsch — as a grave matter
of national interest." Again: How is it
that the Jewish News editorial board

feels that its self-righteous arrogance
trumps the votes of the people of Aus-
tria in a legal, democratic election?
Why not criticize other authoritari-
an regimes? What about Castro, who
has imprisoned and murdered thou-
sands of dissidents, and who wishes to
pluck a 6-year-old boy from the land
of freedom and opportunity, after his
mother died trying to get him here?
What about the communist majority
government of Italy? What about the
government of the Peoples Republic of
China, which has recently executed
several members of the Falun Gong
religious movement for expressing
their views, and has arrested the
Catholic Archbishop of the Shanghai
diocese for affirming Pope John Paul
RID leadership of the Church?
The Jewish News editorial board
should spend less time criticizing the

