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

"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.