The Boy
With the No-Name Disease
By
JOSEPH P. BLANK
No one could help Jerad. For 2 ½
years the Reismans had been driving their little son from their home near
Sacramento, California, to specialists around the western United States. They had seen 27 physicians.
Anguished and desperate, they had reached the end of
their search for a medical solution to the child’s terrible sickness, termed by
one physician as a mysterious “one-of-a-kind disease.” Now they could turn obey them.
Jared was born on August 15, 1972, pink and
beautiful after an easy delivery. He
was a bright, outgoing infant—his mother called him “super baby”—walking by his
ninth month, pedaling a tricycle eight months later.
When he was a year and half old, Marlene and Barry
Reisman took him and his six-year-old brother, David, to Disneyland. There Jared caught a cold, which developed
into a strange and persistent illness.
His lips were swollen. Mucus ran
from his nose to profusely during the night that his crib sheet would be
drenched. Pain contorted his face and
he cried for hours. He acted as if the
had lost most of his hearing.
A pediatrician suspected a nasty cold or
teething. Then black-and-blue marks
appeared on the child’s body and legs.
Any scratch of cut produced heavy bleeding. The pediatrician became concerned, but test showed that Jared did
not have hemophilia or leukemia.
The doctor recommended that allergy and hearing
specialists examine Jared. The boy’s
ears were found to be filled with fluid, and scratch tests indicated that he
was sensitive to airborne substances such as pollen, dust, dander and
mold. The allergist prescribed
antihistamines daily and an anti-allergy injection each week.
The medications caused havoc. Did the original symptoms flourish, but
Jared’s coordination became so poor that he would stumble and fall; he couldn’t
even sit in a chair. He lost his
appetite. Yet, sometimes, he would turn
into a hyperactive, wild little animal.
Other medications were tried. Nothing helped; everything induced
terrifying reactions. Once, after
taking a quarter-tea-spoon of antihistamine, Jared became delirious, then slept
for 36 hours. Marlene and Barry were
afraid that medications would kill their son, so they stopped giving them to
him.
During his first year of misery, Jared’s symptoms
subsided twice, for periods of about three weeks. He stopped crying and played happily with his toys.
But the good periods inexplicably ended while Jared
was outdoors. He staggered, fell down,
and all the old symptoms immediately flared.
The child’s suffering drove his parents to
despair. With Barry at work, Marlene
took the brunt of the boy’s cries and screams, restraining him from madly
dashing around the house to escape his pain, and holding him, with a towel over
his shoulder to absorb the mucus, for into the right when he couldn’t sleep.
When Jared was three, an allergist told the Reismans
that the suspected an unknown range of allergies, but he didn’t know how to
deal with it. He mentioned seeing a
television drama about a Houston boy with an immune deficiency who was placed
in a plastic-bubble isolator. There he
lived, played and developed normally.
Maybe such contraption would help Jared. But at the time the Reismans didn’t take the notion seriously.
Jared’s hearing had grown worse now, and he had
stopped talking. A hearing specialist
recommended that drainage tubes he placed in Jared’s ears, under
anesthesia. Told about the boy’s
reaction to even the smallest amount of medication, however, he refused to
undertake surgery. Have Jared examined
by the Mayo Clinic in Rochester, Minnesota, he urged.
In April 1976, the Mayo staff made exhaustive tests
of the boy. They could find no
identifiable disease of disorder, except for a borderline reaction to
‘cladosporium’, a common airborne mold.
Clinically, Jared was healthy; actually, he was terribly sick. The examiners were concerned and
baffled. One physician later said Jared
might not live beyond the age of eight and added that he obviously had
“something” no one else had.
That summer, Jared sank deeper into sickness. He couldn’t walk. He just lay there, totally unresponsive. The Reismans wanted to take him back to
Mayo, but were afraid he would not survive the trip.
They resumed visits to local doctors. Several diagnosed Jared as mentally
retarded. When it was pointed out that
the boy had been fine during the first 18 months of his life, and had since had
periods of being alert and active, the doctors didn’t believe it.
But now the Reismans were wondering if there was
something in the air that was destroying their child. They had consulted by telephone with an ear specialist, who told
them that a home air-filtered system had helped his own allergic children. Barry checked manufacturers and found in
air-cleaning system that removed 94 percent of the particles in air. It cost $575 so he asked a doctor if it was
worth installing. He was told, “You
don’t treat retardation with a filter.”
Jared’s last visit to a physician was in August
1976. “Your son is severely retarded
and autistic,” the doctor told Marlene.
“There’s no point in your coming back.”
The Reismans had run out of doctors. Three weeks later, Jared went outdoors and
collapsed. He became delirious. Marlene put him in the car and, weeping and
near hysterics, drove around aimlessly for three hours. There was no place to take him for
treatment. She could do nothing to
help. Feeling defeated, she finally
carried Jared into the house.
When Barry came home, Marlene said, “Let’s go ahead
with the filters. It’s up to us to find
a way to save our son.”
Two weeks later a high-efficiency system, designed
to filter mold, spores, dust, pollen and other particles from their house air,
was installed. The night it hummed into
operation Jared went to bed with his usual wheezing. The Reismans cried themselves to sleep.
In the morning Barry left for work, and Marlene
waited for Jared to announce his waking crying. At ten she still heard no sound from his room. She finally worked up the courage to go
in. Jared was sitting up in bed,
smiling. His breathing was even. The crib sheet was dry. To Marlene, it was “a miracle.” Her son had become a little boy.
And a little boy he remained. He slept long and peacefully. He enjoyed food. His symptoms, one by one, disappeared. And Jared reentered the world of sound with curiosity. In the shower he loved to listen to the
splashing water. He was overjoyed to
learn that speech comes from the mouth and kept touching his mother’s lips,
silently asking her to talk. But he
felt no need to talk himself. He could
express his wishes with his hands.
Marlene decided to play dump to his gestures and
force him to use words. Whenever Jared
motioned for something, she responded with, ‘what did you say?” Jared grew frustrated and threw
tantrums. But one night, when his
mother had been telling him it was time for bed, the silent boy suddenly
spoke. “Go to bed,” he said—and the
sound of his own voice so shocked him that he toppled over, and then began
crying out sheer happiness. After that,
he talked more and more each day.
Jared’s zest for life was insatiable. He had been locked in a dark closet, and now
he was free. He watched ice cubes
melt. He was fascinated by steam from a
kettle, talking apart and reassembling tables, bookcases, and faucets.
His parents knew he would soon have to get out into
the world. “He should be with kids his
own age,” Barry said. “I would play
with his little sister, Alicia, on the front lawn,” Marlene added, “and I saw
Jared at the window, watching us longingly.”
Barry called allergy centers for advice. A nurse at a Denver hospital told him, “You
can’t escape what’s in the air unless you go to the moon.”
The Barry began calling manufacturers of safety
respirators. He was told that the
expert on air filters was Bruce Held, at nearby Lawrence Livermore National
Laboratory. Held listened to Barry,
asked a few questions, the said, “Would you like me to build your son a
portable, battery-powered air purifier?”
Tears came to Barry’s eyes. He
chocked out a “Yes, yes, thank you!”
Held’s purifier consisted of a motor-driven fan, a
rechargeable battery that lasted about four hours, a filter, and a hose that
carried 99-percent filtered air to a child’s crash helmet, draped with
transparent plastic, tied at the neck with a drawstring. Pressure inside the headgear was higher than
normal atmosphere, thus preventing dirty air from leaking in. The five-pound power unit was carried in a
knapsack strapped to the back.
The Reismans helped Jared into the helmet and went
outside with him for a half-hour. The
system worked perfectly. Jared’s
outside time was gradually extended to the full four-hour life of the
battery. The rode his trike, watered
the lawn, climbed the monkey bars in the park, went shopping.
Time had not dimmed his memory of the pain and
sickness, however. Once he came tunning
out of his room, his eyes wide with fear, saying, “The filters aren’t
working!” His parents could not tell
the difference, but Barry called in a repairman. Sure enough, a belt was slipping on the air conditioner, which
blew air through the unit. The filter
was working at only 50-percent efficiency.
Within a few months, it became obvious that Jared’s
helmet alone was not enough to ensure total comfort. Particulates in the air continued to cause itching on his
body. The solution was comparatively
easy: and astronaut-like space suit.
Inquires led Barry to a Cambridge, Massachusetts, engineering firm that
developed such suits. There the
Reismans got invaluable advice in securing an outfit for their son. The suit made for Jared criminated his
itching, and a newly designed clear head bubble gave him better visibility.
Today, Jared is not the least self-conscious about
his gear. He just smiles when another
youngster suddenly sees this creature from outer space and darts away. He amiably chats with the kid who approaches
him and says, “Boy, that’s neat. Where
cans I Buy one?”
On turning six Jared was enrolled in a regular
school. He does most of his work in a
home study program, since the short life of his battery backpack prevents him
from remaining at school full time. At
the end of the first grade his report card read “Excellent” in all
subjects. In his second year the
teacher wrote: “Jared’s work is superb.”
And Jared’s future?
“No one knows what will happen,” Marlene centaurs. “He may outgrow his sensitivity to air
particles. I believe that when Jared is
in his teens he will take over the job of finding a solution to his problem. He’s far too thrilled by life to accept his
disability.”
One night, after a downpour had drenched the area,
Marlene and Barry heard their front door close. They checked the house.
Jared was gone, and his helmet and power pack were still in his room. Something had awakened the child, and he
sensed that the heavy rains had cleansed the air so that he was free.
Barry followed him to a park two blocks away. There he watched Jared roll on the grass
like a puppy. Then the little boy out
of the dark closet exuberantly kissed the grass and shouted, “World, I love
you!”
