15-year-old recovering from heart surgery diagnosed with EDS

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At 15-years-old-and in the past few months-his life has been turned upside down. Adam Inzauro is recovering from a vascular surgery of his aorta, being malnourished, and being diagnosed with a rare tissue disorder.

He will fight it the rest of his life.

"We never knew about it before but now that we know, we have to be careful," Adam Inzauro chuckles.

Adam hasn't lost his laugh despite two months of unbelievable health issues.

"He was complaining of lower pain in his back and he came out into the hallway and he was crying because of pain," said Adam's dad, Tony.

Tony says they rushed his son to the emergency room. Adam had an aneurysm and underwent heart surgery. He spent 36 days in the hospital...with his family by his side.

"They had some super cool stuff in there but it was super boring," Adam said.

His health obstacles didn't begin with the aneurysm. His journey began a year and a half ago.

"He was diagnosed with EDS, Ehlers Danlos Syndrome which is a genetic tissue disorder," said Tony.

Adam is Classic Type, which is a collagen deficiency. He was never diagnosed with EDS as a kid.

"I would always bruise easily and I had to be careful like if I every fall I could easily break something," he said.

Hypermobility is also a symptom. Adam says he was always that way growing up.

"I could lay on the ground and make my body into a circle," he said.

A year ago, he was officially diagnosed with EDS. The aneurysm followed, heart surgery, and he became malnourished.

"I started at 110 pounds and I ended up at 95, 94ish," Adam said.

"He's starting to eat human food. He still hasn't had a real dinner going on in 60 days." Tony replied.

Adam is now hooked to a feeding tube and a picc line for nutrients that is connected to his heart.

"This is the first time they'd seen vascular issues in a classic-type patient."

Adam's making progress. This past week, the Papillion La Vista Freshman got to go back to school.

"He's only on the 2 machines 12 hours a day so he doesn't have to carry those 2 machines at school," said Tony.

His dad says Adam has always been tough, and despite the emotional, physical, and financial challenges this family has faced, they will get through it together.

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"Adam will see a specialist the rest of his life."

But Adam doesn't let it bother him. Like most teens, his main concern is when he has to be home.

"It's like a curfew I guess because I have to be back at a certain time so they can hook me up to machines," said Adam.

Word of Adam's health issues spread. A man who knows Adam's grandma offered to throw a fundraiser for his family. It is coming up Sunday, May 1st. Adam's father says he is incredibly grateful that someone would offer to do this for their family.

Here are details on the Benefit for Adam.