Student-athlete hopes to provide inspiration, voice to those with 'orphan' diseases

Published: Tuesday, Nov. 1 2011 7:00 p.m. MDT

Doug Schulte, bottom, who has been living with L-CHAD an "Orphan" disease, wrestles with Kevin Clem, at Kingdom Klub in Woods Cross.

Ravell Call, Deseret News

BOUNTIFUL — Watching Doug Schulte on the wrestling mat, it is hard to believe the Viewmont junior had ever been anything but a strong, healthy, competitive young man.

But there was a time when his parents weren't sure their youngest son would even live.

And those fearful times were followed by many moments of wondering what Doug Schulte's life would be like.

Would it ever be anything close to normal? How long would they have him? And how could they care for a child who had a disease so rare that many of the medical professionals who treated him didn't even know what it was?

"One doctor told us to take him home and make him comfortable," said his father, Scott Schulte.

Doug was sick; doctors were stumped; his parents were relentless.

"It was months before he was finally diagnosed," said Karen Schulte. "We'd go to the hospital and they'd say, 'Here comes the mystery baby.' "

At one point doctors gave Doug medication for seizures.

"He didn't learn to do things because he was drugged," said Karen. "After a couple of months, I decided not to give it to him any more."

At seven months, doctors took seven layers of his skin and sent it to a laboratory in Texas hoping to figure out what was making the little boy sick. Just before his first birthday, he was diagnosed with Long Chain 3-Hydroxyacl CoA Dehydrogenas (L-Chad) — a disease so rare, its incidence is not definitively known. In short, Doug had a metabolic disorder that prevented his body from converting certain fats into energy.

The diagnosis created as many questions as it did answers. The prognosis was so grim, his parents weren't sure he would ever be able to even care for himself.

"He didn't have any motor skills in his hands," Karen said. "Even now he doesn't have those fine motor skills. He never crawled when he was a baby. Now for him to run from Dick's Market to the Bountiful Temple … This is a boy we never thought would walk."

Karen become her son's advocate as she educated herself on how nutrition was the key to managing Doug's disease.

"We just learned by trial and error," she said. "The most important thing was just watching his fat intake. We learned to make our own pizza with limited cheese, brownies out of refried beans … We just learned. He vomited a lot, so we never went to restaurants."

Eventually, the Schultes got to a place where Doug's body was getting the nutrients it needed. He went from undersized and under-nourished to being the biggest child in elementary school.

Doug watched baseball on television and asked his parents if he could play. Karen's brothers and father had played, so she agreed.

"I was watching baseball on TV and I thought it would be fun," Doug said. "I really wasn't that active when I was young."

In fact, Doug was so "chubby" that his mother worried he might hurt someone else when he decided to play football.

Scott Schulte encouraged Doug's participation in sports, even facilitating a sit-down with coaches when Doug had questions and concerns.

"My dad had a really big part in it," he said of his decision to play football and wrestle.

The physical demands of sports forced Doug to understand even more about nutrition. He had to find ways to get his body fuel without the high-fat, easy answers his friends had.

"It was hard because I grew up knowing what I couldn't have," Doug said. "Like barbeque chips. They were a treat for me. Some kids would have them with every sandwich."