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Defying Dystonia from page
A15
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The Future
A genetic test now is available to
determine if a person is a carrier
of the DYT 1 gene, but Max's twin
sister Sophia has not been tested.
"She doesn't have any symptoms
and she's older than the age when
the type of dystonia Max has usually
comes out:' Sandy said. The Dystonia
Medical Research Foundation (DMRF)
maintains that genetic counseling
guidelines strongly discourage testing
asymptomatic children.
But the Herczegs are well aware of
the chances of their children passing
on the gene.
According to the DMRF, the children
of a single carrier — including both
those who exhibit symptoms and
those who don't — have a 50 percent
chance of inheriting the DYT1 gene. If
the child does inherit the gene, there
is a 30 percent chance that symptoms
will develop. Only one parent needs to
have the gene for a child to inherit the
disorder.
"But seeing the success of DBS is
very encouraging:' Chuck said. And
I am a big proponent of stem cell
research!'
There is also ongoing genetic
research. The DMRF outlines a pro-
cess called pre-implantation genetic
diagnosis, a method of in-vitro fertil-
ization in which couples can dramati-
cally reduce the possibility of a child
inheriting several forms of dystonia,
including DYT1 dystonia.
Several of a woman's eggs are fer-
tilized outside her body and those
conceptions that test negative for the
disease mutation are re-implanted into
her uterus.
Chuck's hope is that "people can
become educated about dystonia and
will support research in finding solu-
tions to this disorder!'
A New Beginning
Max, now a sophomore at North
Farmington High School, is undergo-
ing no treatment or therapy and no
longer takes any medication for dys-
tonia. All he'll need next is to have the
battery replaced in the neurostimula-
tor in a few years.
Max says he can do pretty much
anything he wants to do, "except
maybe go through a metal detector
without setting it off:' he said.
Chuck refers to the outcome of Max's
surgery as a miracle. "Dr. Alterman
changed all of our lives:' he said.
Sandy said,"He's fixed, as far as I
am concerned. He's 98 percent better!'
Max doesn't use the word "cured:' but
is comfortable saying his disorder is
"under control!'
"I would want anyone whose doctor
tells them this surgery is an option to
do it," Max said.
Dr. LeWitt concurs. "In the best of
circumstances, the surgery offers Max
dramatic improvement and excellent
and potentially permanent control;'
he said.
Giving back, Max spent this past
summer as a volunteer assistant for
Beaumont's pediatric physical therapy
camp, and has continued volunteering
once a week since September.
"We all went through this together
as a family:' Sandy said. "I kept telling
Max he'd walk someday, and I believed
it. We just kept going and going and
going. I didn't care what we had to do.
I just wanted my kid better. It had to
be hard and crazy and inconvenient
for Sophia, but she was always there
for Max. And Max was great. He had
a great attitude. He even consoled me
when I had a bad day"
To Chuck, "going through some-
thing so serious definitely puts the
little things in perspective he said.
"After Max's surgery, I was waiting in
line at the airport to go home; it was
snowing out and we were delayed and
everyone was screaming and argu-
ing — and I was smiling. A woman
turned to me and asked how I could
be so happy. And I told her, 'Because
my kid just had brain surgery — and
he's OK!"
To help fund education, sup-
port and research, contact the
Dystonia Medical Research
Foundation: (800) 377-3978,
dystonia®dystonia-foundation.
org, or dystonia-foundation.org .
Also contact wemove.org at
wemove@wemove.org .
For a list of genetic counsel-
ors, go to the National Society of
Genetic Counselors Inc. at
nsgc.org . A tremor support
group, started by Shari Finsilver
of Orchard Lake, who had DBS
for essential tremor (tremor that
is not a result of any other dis-
ease or condition) 10 years ago,
will be taken over by the Henry
Ford Hospital Movement Disorder
Center in West Bloomfield in the
near future and will be open to
people with dystonia.