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UI Children's Hospital Kid Captain 2010 - Ross Wiltgen

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Published on Jan 28, 2011

It was around Thanksgiving in 1998
when Alayna and Ray Wiltgen of Altoona,
Iowa, first became concerned about their
2-month-old baby, Ross. The Wiltgens were
visiting family in Morrison, Ill., and Ross was
very sick. He was vomiting frequently, he
looked pale and lethargic, and he couldn't
sleep.
Ross seemed to be getting worse, so
the parents took him to see a pediatrician
in nearby Clinton, Iowa. Blood tests there
showed that his hemoglobin levels were
dangerously low.
Ross was rushed by ambulance to
University of Iowa Children's Hospital, where
he battled against a seemingly mysterious
illness. Ross' blood pressure had soared,
and his kidneys were failing. Alayna and
Ray prayed for the best as they braced for
the worst.
"All they could do at that point was
manage his symptoms while trying to figure
out what was wrong," Alayna recalls. "At about
day three, the doctors said it's time to start
looking for rare diseases."
Ross' medical team determined that he
had a genetic disorder that prevents him from
metabolizing cobalamin—vitamin B-12—that
is essential for the normal development and
functioning of the brain and nervous system
and other organs, as well as the formation of
blood.
Ross' condition, known specifically
as cobalamin G defect, was extremely rare—
the first in Iowa and one of only 40 such
documented cases in the world.
In consultation with physicians and
researchers around the country and the world,
UI Children's Hospital specialists implemented
a treatment plan to save Ross' life and prevent
further damage to his nervous system and
kidneys. Over time, his health steadily
improved.
Ross and his family have made
numerous trips to UI Children's Hospital over
the years, seeing specialists in genetics,
nephrology (kidneys), endocrinology (thyroid),
and ophthalmology (eyes), among others.
Today, he takes several different daily
medications at home, as well as vitamin B-12
injections three times a week—shots he will
need for the rest of his life—and human growth
hormone injections six times a week. Ross
continues to receive follow-up care at
UI Children's Hospital.
"It's such a part of his life now that he's
not afraid to go to the hospital," Ray says. "He
looks forward to going to Iowa City. He gets to
see his nurse-friends and his doctors."
"We're a spiritual family, so we figure that
UI Children's Hospital was where we were
supposed to be for Ross to get the care he
needed," Alayna says. "We've had some rough
patches, but he's had relatively good health...
the genetics team is trying right now, even as
we speak, to figure out what else they can do
for him."
"You're in good hands when you go
there," Ray says.
Ross, now 12, is an engaging young
man. He enjoys school and spending time with
brothers Nick, 9, and Blake, 6. He wants to join
the Air Force when he grows up.
"Yep, drive some airplanes and tanks and
jeeps and helicopters," he says with a smile.
"I'd say that's it."

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