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By ANNE KAROLYI Times Leader Staff Writer
Sunday, August 20, 1995 Page: 1D
I am tired of this secret, he says. Tired of excuses for why I take naps,
for why I gulp pills and go to the doctor a lot and sometimes don’t want to
leave my room.
I am tired, he says, of lying to my teenage friends and watching what I say
and wondering what people would do if they knew.
“I am carrying a great burden,” he says. “And I am tired of it.”
Christopher Robinson of Mountaintop, lover of carrots and swimming and
Michael Crichton books; fan of the Redskins and the Braves and Sega video
games;
Christopher Robinson, who fights with his brother and worries his mother
and can’t wait to start eighth grade in just ten days;
Christopher Robinson, 13 years old, has AIDS.
Until this moment, almost nobody knew. But the dark, looming secret had
grown nearly worse than the truth.
I can’t live this lie anymore, Christopher told his parents. I want to tell
my secret in the newspaper. I don’t want to pick and choose who to tell when,
to answer the same questions again and again.
“And people might learn from me,” Christopher says. “Learn not to be scared
of people with AIDS.”
* * *
Christopher is Dawn Rebarchak’s first child, born on Thanksgiving Day,
1981. Dawn was 18 then, in her first marriage. “During those first years,”
Dawn remembers, “Christopher and I did everything together.”
Like three of his four younger brothers, Christopher has hemophilia, a
genetic disorder which prevents blood from clotting. Women like Dawn carry the
gene which causes hemophilia, but males inherit it.
A bad bump, bruise or cut forces hemophiliacs to inject the clotting agent,
or “factor,” their blood lacks. Without it, severe joint and muscle problems
occur.
The clotting factor is derived from donor blood. The treatment always was
considered essential, manageable, safe.
That was before AIDS.
Blood transmits HIV, the virus that destroys the immune system and causes
AIDS, or acquired immune deficiency syndrome. During the early 1980s, when the
disease first appeared in the United States, as many as 10,000 hemophiliacs
injected HIV-infected blood products.
Thousands of them are now dying. Thousands are already dead.
Dawn first heard about a mysterious, fatal disease, transmitted through
blood and other body fluids, in 1982. Christopher, a quiet, playful baby, was
a month old.
“I called the doctors. They said not to worry,” Dawn says. “They said there
was no problem.”
Seven years later, the mailman delivered a form letter from Dr. M. Elaine
Eyster, director of the Hemophilia Center of Central Pennsylvania at Hershey
Medical Center. “Dear Parents … As part of our ongoing collaborative study
with the National Institutes of Health, Christopher’s blood was tested for the
antibody to the AIDS virus, HIV. I regret to inform you his test was
positive.”
Dawn choked. “I was horrified, terrified.” Then divorced, raising
Christopher and Matthew, her second child, Dawn kept the news to herself.
Two years later, she and her second husband, James Rebarchak, decided to
tell Christopher. He was 9 years old.
Do you know about AIDS? Yes, he said. Well, they said, it has happened to
you.
Dawn, now 31, takes a deep, shaky breath. “He cried and cried. He asked if
he was going to die.”
* * *
So the secret began. His parents told only immediate family, a few of their
close friends. But Christopher’s friends, classmates, the neighbors, the kids
in religion class –nobody knew.
As he played baseball, went to sleepover parties, earned a spot in the
Junior National Honor Society for his straight-A grades — nobody knew.
As he rode his bike or hit a home run or dunked his friends in the pool —
nobody knew.
“I’m not sure why we kept it a secret,” Dawn says. “When we suggested
telling anyone, Christopher would yell, `No. No. No.’ ”
Christopher shrugs. He weighs 67 pounds — HIV often slows growth in
children — and a purple, Charlotte Hornets jersey hangs loosely from his
slight shoulders.
“It just wasn’t the right time to tell,” he says. Now it is.
Christopher sometimes feels sick, misses school. He wants to speak up when
kids crack jokes about AIDS, or when Sen. Jesse Helms says federal AIDS
funding should be cut because homosexual men get the disease through
“deliberate, disgusting, revolting conduct.”
I can’t hide it anymore, Christopher says. I don’t want to hide it anymore.
And he runs outside to shoot hoops in the cool August dusk.
* * *
Nobody knows exactly when Christopher was infected. By 1985, drug companies
began heat treating the clotting factor, killing the chance of HIV infection.
But sometime between Christopher’s infancy and grade school, an HIV
infected person donated blood; a drug company extracted the clotting agent;
and Christopher was injected with a fatal disease.
His hemophiliac brother, 11-year-old Matthew Robinson, was not infected.
“They are young enough to be just at the end of it,” says Jill Friedman,
National Hemophilia Foundation spokeswoman in New York. “For them, it was all
a matter of luck.”
Of his stepbrothers, Eric Rebarchak, 6 months old, is not a hemophiliac.
Adam Rebarchak, Eric’s fraternal twin, and James “Jamie” Rebarchak Jr., 3,
are.
Because of donor screening and safety measures, doctors say Matthew, Jamie
and Adam probably will never get infected with HIV through blood products.
Just in case, they get tested for the virus each year. Each test brings
another form letter.
“I still get petrified,” Dawn says. “I just don’t think I could handle it
again.”
In their toy-filled living room, James grabs his wife’s hand. “Yes, you
could. We could handle it.”
* * *
The family lives in Mountaintop, in a development of square lawns and
streets where kids ride bikes and color with chalk. Neighbors know each other,
at least by sight. Strangers get noticed.
James, 31, is a manufacturing engineer. He and Dawn had dated for 10 weeks
when he proposed. He did not know about Christopher’s HIV infection. The next
morning, Dawn said they needed to talk.
“I bawled. I was hysterical. I said, `You might not want me and the kids
anymore.’ He said, `I love you. I’m not here just for the good times.’ ”
They’ve been married five years. Christopher and Matthew call James “Dad.”
Dawn stays home to care for the children. The boys with hemophilia require
regular shots, as they play, fight and tumble through the house.
“People have criticized me for having more children, when I knew they could
be hemophiliacs,” Dawn says. “But how could I not want my children? They’re
wonderful. They are my life.”
It is a house where children play and dogs slobber and the cat chases the
parakeet. Everybody shares chores; nobody gets away with bad language,
skipping homework or blowing bubbles inside the house.
“This is what we both wanted,” James says. “In spite of it all, we are
happy.”
* * *
It is a happiness tinged with sad reminders.
Christopher still cannonballs into the pool, wrestles with the family’s
puppy. But he battles a constant sinus infection and gets painful sores in his
mouth.
Ten times a day, Christopher swallows 11 kinds of drugs. “They taste
gross,” he complains. “But I take them.”
He told his friends they are for a liver problem.
Some days, Christopher wakes with a mouth sore, or tires walking up the
steps. If he gets a cut, or if his sores bleed, Christopher won’t leave his
room until the bleeding stops. “I want to stay away from my brothers,” he
says. “Just in case.”
At first, Dawn says, they regularly called the national AIDS hotline
(1-800-342-AIDS). Could he swim in a pool with no risk to others? (He can.)
Can the virus live on glasses or utensils? (It can’t.)
“We had to learn that there are really limited ways to get this. It took a
while to get used to thinking that way,” Dawn notes.
* * *
Christopher practically lives in the backyard pool. Make-A-Wish, a
foundation which grants wishes of children with terminal illnesses, got it for
him last summer.
For his confirmation in the Catholic church this fall, Christopher picked
St. Jude, patron saint of hopeless causes and sick children, to emulate. He
talks about driving, getting braces, attending Cornell University to become a
veterinarian.
“It’s hard raising a child who might have less time,” James admits. “You
want to be more lenient … You want him to experience everything he can in
the time that he has.”
Dawn agrees. “There is going to be laughter and happiness and good times. I
would hate to live in a life where we all spent every day with the reality of
this, if we all focused on the fact that Chris could die.”
His mother smiles, her eyes bright with hope and tears. “Every day,” Dawn
says, “we could be closer to a cure.”
* * *
Nobody knows how long Christopher will live.
He knows other kids who died because of AIDS. He sees dying children in
isolated intensive care rooms at the National Institutes of Health Hospital in
Bethesda, Md., where he goes for experimental treatments.
“Sometimes I get mad … mad and depressed because I didn’t deserve this,”
Christopher says. “Nobody deserves this.”
“But I don’t think about it much. I feel fine now … I just want to be a
regular kid.”
I am glad this secret will be over, Christopher says. But a new chapter in
Christopher’s story begins.
Will his friends desert him? Will the community shun them? How will people
react at school?
“Well,” says Christopher, “I guess I’ll find out.”