Oct. 23, 2010
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IOWA CITY, Iowa — It was around Thanksgiving in 1998 when Alayna and Ray Wiltgen of Altoona, Iowa, first became concerned over 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 UI Children’s Hospital, where he battled against a seemingly mysterious illness. Ross’ blood pressure had soared, and his kidneys were failing. Alyana 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.
“It’s such a part of his life now that he’s not afraid to go to the hospital.He looks forward to going to Iowa City. He gets to see his nurse-friends and his doctors.”
Ray Wiltgen, father of Ross
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 boy. 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.”