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Health & Fitness

COVER STORY Genetic from page 15

knew. There is a
look, the way the
faces are shaped
that is the same in
all children who
have FD."
Fine became
what she termed
."an unofficial,
unpaid nurse."
"I practic a lly
lived with Joel and
Susan at
Beaumont," she
said. "During the last seven years of
Susan's life, she was an in-patient there
350 times and in the emergency room 180
times. Every time -she was admitted, I
stayed with her, in a chair that became a
bed."

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Children with FD may have varied symp-
toms of differing severity. Joel and Susan
each had frequent bouts with lung infec-
tions that are common among children
with FD.
"Joel's temperature would rise and go
down without any control:' Fine said.
And Susan and Joel both had severe
scoliosis [spinal curvature], which is pres-
ent in 90 percent of youngsters with FD.
"Because these children cannot tolerate
anesthesia, Susan could not have surgery
to correct it, so she wore a whole body
brace for eight years, 24 hours a day,' Fine
said. "And it did absolutely nothing.
"Near the end, Susan was not able to
swallow as her esophagus had closed up,
so I fed her through an intravenous feed-
ing tube."
When she died at age 36, she was one of
the oldest people with the illness.
Other FD symptoms may include poor
muscle tone, delay in developmental mile-
stones such as walking and speech,
unsteady gait, breath holding to the point
of fainting, poor weight gain and growth,
decreased or no reaction to pain, extremes
in blood pressure and gastric disorders.
Joel and Susan also had what is called
"dysautonomic crisis:' incidents of
extreme physiologic response; caused by
emotional stress or physical change,
resulting in vomiting, marked increase in
blood pressure, sweating, drooling,
increased heart rate, blotching of the skin
and irritability.

Smart And Talented

In spite of their illness, Fine said, "Joel and
Susan were quite intelligent. Joel missed
half of every semester of school but still
got A's and A pluses."
Both children graduated from high
school and from Oakland Community
College and held part-time jobs. Joel also

went to Pontiac
Business School.
"He excelled in
math and was an
artist:' she said. "He
studied photogra-
phy, and a friend's
son built a dark
room in our base-
ment for him. He
lived to be 24 years
old and.then he
died in his sleep of
a seizure. But he

suffered all his life."
Susan, too, was talented, her mother
said. "She was involved with computers
and typing, and she was an author. She
wrote a children's book she hoped would
be published by Golden Books. I still have
the manuscript:'
Susan learned to make jewelry out of
paper clips and contact paper when she
was 10 and a patient at Mt. Carmel
Hospital in Detroit. "Later, when she was
confined at honie, she made jewelry and
for several years I sold it for her at Shaarey
Zedek's Women's World:' Fine said. "From
the money she made, I would order what
she liked from QVC. I still have the original
necklace she made."
Having time for herself was unheard of,
Fine said, and "my other two daughters
had to be independent their whole lives
because I was so occupied with Joel and
Susan."
"To be able to cope because of past
years:' Fine said. "I go to shul at Shaarey
Zedek every Shabbos to get the strength to
go on for another week. I'm.the first to
arrive. It gives me comfort."

An Advocate For All

Fine's official advocacy role began with a
'visit by Judge Hilda Gage, then of the
Oakland County Circuit Court.
"Twenty-five years ago, Hilda Gage came
knocking on my door:' Fine said. "She had
lost a child, Robert, at age 6, and has a
daughter, Jackie, 41, who has the same ill-.
ness. She wanted help in starting a-group
to make money for research:'
Immediately, Fine and her late husband
became involved. Fine received an award
from the former Dysautonomia
Foundation-Michigan Chapter for her
efforts.
Research continues, both "to find a drug
to keep children with FD stabilized and to
work toward a cure Weill said.
Until then, Pauline Fine's car trunk will
be filled with pamphlets. When the local
FD chapter disbanded several years ago,
she began a personal crusade, distributing
the literature in doctors' offices, at both
Shaarey Zedek locations and anywhere
someone might benefit.

COVER STORY Genetic on page 19

16

January 26 • 2006

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