Pitt-Greensburg student endures battle against mitochondrial disease

| Sunday, April 27, 2014, 11:24 p.m.

Tyler Liebegott of Delmont looks like any other 21-year-old student strolling the campus of the University of Pittsburgh at Greensburg.

Liebegott, however, has mitochondrial disease and has survived longer than 98 percent of people born with the disease. He has endured 38 surgeries and has survived four metabolic strokes.

The disease, which affects the parts of cells that generate energy from food and oxygen, often goes undiagnosed or misdiagnosed. It affects between 1,000 and 4,000 children born in the United States each year.

“I say I don't know how to explain it if doctors can't explain it to me,” Liebegott told about 200 students during a talk on the Hempfield campus. He is a junior studying biological sciences and psychology.

When he was 6 months old, Liebegott's parents thought he had a stomach flu, which worsened. It began a long series of symptoms, doctors' visits and diagnoses.

When he was 4, the pain and suffering was so great, his parents, Dana and Patti Liebegott, made a deposit on a coffin, he said.

“My body was just suffering, trying to produce, trying to get energy to grow,” he said.

Specialists explained mitochondrial disease to his parents and told them he might not live past age 10. Doctors said they could only offer pain management.

When he was 6, Liebegott was given six weeks to live and placed under hospice care. One October night, he and his father were watching wrestling on TV when Liebegott started to convulse. His heart stopped on the way to the hospital, but the ambulance crew did not know his parents had signed a “do not resuscitate” order.

“The ambulance did not have record of that DNR, or I wouldn't be here today,” Liebegott said.

Between ages 4 and 9, he underwent 17 surgeries. Four times, he was told he had weeks to live. Once he took a Make-A-Wish trip to Disney World, but he was too sick to ride any rides, he said.

But then his symptoms eased for about six years.

Liebegott said he was able to attend school more often, even joining the basketball and baseball teams, although he often just cheered from the sidelines.

At 15, his heart stopped twice on the operating table. “I didn't know what was wrong, but I knew something was bad,” he said.

He was in a coma for five days. Out-of-state family visited to say goodbye, and his parents picked a burial plot.

Patti Liebegott said she never thought she would have to make decisions like that for her son.

“I never know when I'm going to be back there again,” she said.

But many surgeries were successful, allowing Liebegott to graduate from Franklin Regional Senior High in Murrysville in 2011. Two years earlier, he told his story to 1,500 students at the high school, where he got a standing ovation.

Liebegott said he finds the courage to tell his peers about his journey from something his brother, Jonathan, 24, said when they were growing up.

He told Tyler, “No matter what happens, I will live the rest of my life trying to change the world the way you've changed my life.”

Liebegott has worked with the United Mitochondrial Disease Foundation, based in Plum, speaking at conferences and mentoring young children with the disease.

He started a website — trustinhope.com — to share his message.

Today, while studying for finals, Liebegott worries about blood clots, medication and the ever-present pain.

Patti Liebegott said the disease is difficult for families because of its unpredictability.

“There's still no cure, and really they don't understand it all because it's so unique and affects every person so differently,” she said. “He still has an upward battle.”

Sammy Ayasso of Murrysville said he has watched his best friend battle surgeries, weakness and pain for the past six years.

“He's a warrior,” Ayasso said.

Liebegott said every situation, no matter how negative, presents opportunities to be cherished.

“We're missing the whole point of being here, of getting up every day and walking to the cafeteria to eat with your friends, taking that test that you're probably going to fail,” he joked.

“That's why I speak,” he said.

Liebegott said he is considering becoming a doctor to help children with mitochondrial disease.

“You don't have to be some person who's going to go out and changes a million lives. If you just change one life, if everyone changed one life, we'd all be much happier,” Liebegott told his Pitt-Greensburg audience.

Stacey Federoff is a staff writer for Trib Total Media. She can bereached at 724-836-6660 or sfederoff@tribweb.com.

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