- Associated Press - Sunday, November 2, 2014

NEW BOSTON, Mich. (AP) - Huron High School’s marching band played the school fight song as the football team ran out on the field in New Boston.

The crowd was cheering.

Jason Fryer was in the stands sobbing.

The other fans were looking at him, but he couldn’t even speak. He was overwhelmed by emotion.

It was a moment he never thought he would see, the Monroe News (http://bit.ly/1wCRrda ) reports.

Fryer’s oldest son, Jacob, is a junior running back and safety for Huron’s football team. His younger son, Troy, is a freshman saxophone player in the band.

Five years ago, Troy was told he had just three to six months to live.

As the 10-year-old boy was battling two diseases that were ravaging his body, he told doctors that his goal was to live long enough to play in the band for one of his brother’s games.

“It was extremely emotional,” Jason Fryer said of Huron’s season-opening football game this season. “I thought, ‘Wow, we’ve got to make new goals now.’ People in the crowd couldn’t understand why I was crying.”

A lot of tears of joy and sadness have flowed in the Fryer family over the past five years.

It all began when Troy mysteriously started shedding his body fat. No matter how much he ate, he could not gain any weight.

His stomach swelled and he developed severe hives. Breathing became difficult. Several times he was taken by helicopter to the hospital.

Doctor after doctor studied him, but no consensus could be reached. Finally, the family was told there was nothing more that could be done. The boy had just a few months to live.

“To hear a 10-year-old kid ask, ‘How and when am I going to die?’ is heartbreaking,” Jason Fryer said.

Then finally there was a glimmer of hope.

A doctor at Children’s Hospital in Detroit promised Jason Fryer that she would continue to research Troy’s case. She called from Mexico while vacationing there to say she thought she had it figured out.

Troy actually had two ailments - autoimmune hepatitis and general acquired lipodystrophy.

The family was referred to a doctor in Dallas - one of the few in the country working on general acquired lipodystrophy.

“Only 83 people in the world have it,” Jason Fryer said. “His own immune system attacks his body.”

The doctor prescribed a drug that was experimental at the time. It had yet to be approved by the Federal Drug Administration.

“We refused it at first,” Jason Fryer said. “That was one of the mistakes I made as a parent.”

The situation finally became so dire that the Fryers agreed to give the drug a try.

The results were remarkable.

“Everything changed within one or two weeks,” Troy recalled. “Within four weeks, my stomach went back to normal and I didn’t feel all groggy.”

Day by day, Troy got healthier.

“Within a year, there was a phenomenal turnaround,” Jason Fryer said.

Even the doctors were amazed by results. Troy became a spokesman for Bristol Myers Astrazeneca, the maker of the drug.

He spoke at hearings about the drug, talked to doctors and even addressed employees of the drug company.

“He spoke to the employees to boost their morale,” Jason Fryer said. “They don’t get to see the results of their work very often.”

And his powerful story helped get the drug approved by the FDA in October.

“Troy is kind of a nervous kid,” Jason Fryer said. “He doesn’t like talking about himself. But he spoke up and told one of the doctors they were wrong when they said the drug doesn’t help livers. He pulled up his shirt and said, ‘Look at what it did for me.’”

Troy said going to the hearings and the conferences was intimidating at first.

“It was really, really hard,” he said. “I just told the truth and talked from my heart.”

Now, those who don’t know Troy’s story would have a hard time telling there is anything unusual about him.

Before the emotional football game earlier this season, Jason Fryer went and spoke to the band.

“That day before the marching band came out, I went into the band room and spoke to the whole band,” he said. “I wanted to let them know what was going on. I was crying like a baby. I am a very emotional father, a single dad of four boys. The kids said, ‘Wow, we didn’t even know he was sick.’”

It was an emotional day for Troy and Jacob.

“I honestly almost cried,” Troy said. “Being on the football field when he played was one of my biggest goals.”

“It was a great feeling,” Jacob said. “They (the band) kind of make a tunnel for us and we run through. I looked over there and pointed to him.”

Troy is healthy now, but the diseases always will have an effect on his life.

“He can’t walk on a beach because the sand feels like glass on his feet and he can’t swim because he loses body temperature so fast and he can’t say on top of the water because he has no body fat,” Jason Fryer said. “But all of those are minor things.”

Doctors even approved Troy to play football this season, but Jason Fryer didn’t allow him to take that risk.

Instead, he will run track and wrestle. The brothers will be teammates at Huron in those two sports.

“I have been trying to figure out what I want to do with my life since I know I will actually make it now,” Troy said. “I either want to be a pilot or a motivational speaker.”

Jason Fryer is thrilled that his son can now consider those kinds of choices.

“You go from a child that you don’t know how long you will have, to thinking, ‘Wait, he can have kids now. He has a life now,’” Jason Fryer said.

___

Information from: Monroe News, http://www.monroenews.com

LOAD COMMENTS ()

 

Click to Read More

Click to Hide