Courtesy: Medical Miracles, from Readers Digest 1981.
November.
From the frontiers of science and the far horizons of
personal courage, these stories of medical triumphs and miracles will reaffirm
your faith in the awesome powers of the human spirit. Dramatic victories and
human triumphs.
Selected and edited by the editors of Readers Digest
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!”
