The arrival of a child generates a mix of anxiety, high hopes
and joy. The Wick family of Lombard was no different when dad John
was dispatched to Romania in August 2000 to bring home the newest
member of the family: a 3-year-old girl named Yanella Elena.
Photo by Frank Pinc/Chicago Parent
Erin Wick was diagnosed with subacute sclerosing
pan encephalitis, or SSPE, a rare chronic, progressive
John and Sue Wick had already adopted one child,
now 19-year-old Megan, when they adopted Erin.
Sue, a tax accountant, and their 9-year-old daughter Megan, the
first to be adopted by the family in 1992, held down things at home
until John returned with the little girl they would re-name
Because of their experience with Megan, John and Sue considered
themselves veterans of the bumpy yet rewarding road to an adopted
child's acclimation, but they soon found themselves in very
The power struggles began as soon the family left the airport.
Erin's aggressive behavior only escalated at home. She was
destructive and didn't respond to correction. She raged silently,
throwing herself to the floor and writhing in furious
The Wicks studied the video sent by the Romanian orphanage as
Erin's introduction. They couldn't be sure, but the shy, demure
little girl they proclaimed to be "our daughter" at first sight
seemed to have little in common with the agitated, destructive
little girl who had joined their family.
Not long after her arrival, Erin began disappearing without
warning. Panic would always follow as the neighborhood turned out
to search for the missing child.
As each problem arose, the family attempted to address it, only
to encounter more troubling behavior. Yet there were times when
Erin was simply the smart, charming and engaging little girl
everyone came to love.The following April, the Wicks' fears
compounded when unnerving physical symptoms began to emerge. Sue
described Erin as "droopy," as if she were exhausted beyond
measure, and increasingly clumsy.
Then one morning over an ordinary breakfast, the Wicks' journey
not only lurched off track, but threatened to come to a screeching
halt. Erin began to repeat a nonsensical phrase, "Good dea, Mom.
Good dea," and even more alarming, her mouth contorted to one side.
Sue feared her daughter was having a stroke and rushed her to a
The first doctor to see Erin diagnosed her with subacute
sclerosing pan encephalitis or SSPE, a rare chronic, progressive
encephalitis that mostly affects children and young adults and is
caused by an infection of the immune-resistant measles virus. That
diagnosis was thought unlikely and set aside. Weeks of tests
followed. An operation opened her too small skull to let her brain
naturally expand, but Erin's condition quickly deteriorated.
Erin's language was also fading away. "It seemed like everything
was happening even more. She couldn't even hold up her head," Sue
says.Finally, in July 2001, the Wicks turned to Children's Memorial
Hospital in Chicago for answers. A week of testing, 50 vials of
blood and 40 doctors confirmed the diagnosis Erin received seven
weeks earlier: Subacute sclerosing pan encephalitis, a result of a
very early bout with the measles. Erin had entered the third stage
of the four-stage disease.
Erin was given six to 18 months to live. The Wicks faced
bringing her home to die. Social workers advised that Erin's care
would be beyond the family's capabilities. "We said, 'She's 4 years
old. They gave us a real bad prognosis. We'll just take care of
her.' She was born in an orphanage. There was no way she was going
to die in an institution," Sue remembers.
She was determined to stay strong. "I can honestly say I had
only one major breakdown," she recalls. "We didn't know how we were
going to take care of her and how we were going to manage and what
it meant for our lives."
The family began the grueling odyssey of full-time care for
Erin, who was nearly non-verbal, fed through a feeding tube and in
diapers. As is almost always the case for caregivers, Sue had
little life beyond tending to Erin, even with the help of her
husband, whom she describes as a rock.
"We'll get through it," Sue remembers John saying. "We'll handle
it. Even if it's bad, we'll be OK. We'll take it a day at a time,
we'll have help."Despite generous support from both branches of the
family tree, Sue found herself sinking into the sorrow of the loss
of her dream.
Then Sept. 11 happened.
"I turned on the TV and thought, 'Everybody is going through
something that could be disastrous,'" Sue says. "It shocked me back
into reality. I was living in a daze before that, and it just woke
me up."Life resumed with a new definition of normal. Erin saw
physical and occupational therapists and even attended school. But
as she grew, her care became more challenging, and Sue was
concerned that Erin was not getting enough stimulation at home.
In 2003, after Erin had outlived her prognosis by 18 months,
John and Sue began to realize their 7-year-old's needs would
eventually outstrip their ability to provide for them. They
explored long-term care options. Erin's teacher recommended
Marklund in nearby Bloomingdale, a home-like facility with an
abundance of activities and caring professionals.
"John and I were just enthralled with them," Sue says. They were
certain they could feel at ease there when the need for full-time
care arose. They decided to put Erin on the waiting list that
summer, expecting a long wait.But on the Tuesday before
Thanksgiving 2003, the facility called: There was a sudden opening.
Could Erin be there tomorrow?
Stunned, John and Sue begged for a week to decide.Thanksgiving
became an overwhelmingly anxious weekend as the Wicks turned over
every "what if" again and again. Could they bear to let someone
else take over care of their child, even though that care would
significantly improve Erin's quality of life? They ate their
holiday dinner with heavy hearts.Finally, because it seemed best
for Erin, the Wicks packed up her belongings and took her to
Marklund. Erin's reception immediately brought some peace.
"They fell in love with her immediately, and it was unbelievable
the amount of care," Sue says. "Since that time, she has thrived.
She's happy. Every time you see her she's got a smile on her face.
They take such good care of her; they even paint her fingernails
and … do her hair."
The Wicks include Erin in family activities and keep her
overnight from time to time. But when they do, there's sometimes a
"Erin's care at Marklund is nothing short of remarkable," Sue
says. "She is so happy that when we bring her home, she will whine
because she gets constant attention over there."
It took time for the Wicks to accept and be at peace with Erin's
living situation, but with the benefit of hindsight, Sue now
believes the move was a necessary one."We didn't want her to live
somewhere else. But it actually saved our lives. It saved all of
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