New Boston teen battles rare disease and can't gain weight

Most people dream of having two or three percent body fat, but for one teenager in New Boston, that's been the norm for years.

And it's been a living nightmare for Troy Fryer with a disease so rare, it's captured the attention of the Discovery Life channel.

On the surface, most kids his age would kill to have a body like this. But how Troy got it, nearly killed him.

"The doctors said we can't do anything for you anymore," he said. "And that's when I asked how and when am I going to die?"

The 15-year-old wrestler from Huron High School has been battling a pair of diseases most of his life.

First, is the auto immune hepatitis.   

"His immune system thinks that he is the infection," says his father, Jason Fryer.

He also has generalized acquired lipodistrophy.

It is a rare disease that, in Troy's case, strips away fat from the face and body and redistributes what's left around his liver.

"Troy's liver was nine times the size it's supposed to be," his father says.

It also made him feel as if he was constantly starving.

"It felt like I would eat two or three loaves of bread a day and two packets of lunch meat," he says.

"Four quarter-pound hamburgers at dinner time," his father says.

"A big, six-by-six drawer of oranges and apples," Troy adds, saying that at times it wasn't all bad with triple-decker sandwiches. "It kind of felt really good."

Troy was diagnosed when he was 10 years old. His case is so rare, it recently got the attention of the show 'Diagnose Me' on the Discovery Life Channel.

He is beating back the symptoms of his diseases with a number of medications, including Myalept or Leptin, a drug that was experimental at the time Troy began taking it. It is now backed by the Food and Drug Administration, partly because of Troy.

"Even the medical affairs person came up to him and said without him speaking to the FDA, the drug wouldn't have gotten approved," Troy's father says.

While Troy is doing better and will soon become something of a celebrity, his father warns he's far from being in the clear.

"The best way to explain it right now is, if you're standing in the middle of the woods five years ago, all the trees were falling down all around us," says his father. "Now, the trees aren't falling but we haven't found our way out of the woods yet."

"I don't want to think about what bad [might] happen," Troy says. "I just hope I will have a normal life."

A normal life. 

It's something most of us take for granted, but something Troy cannot.

That episode of 'Diagnose Me' will air Friday, May 15, 2015 on Discovery Life Channel.

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