Rare Genetic Disorder is Not Going to Stop This York Junior from Focusing on a Bright Future

An Elmhurst teen’s dream of visiting New Zealand will come true this summer, thanks to the Make-A-Wish Foundation.

Joseph Vitali, a 16-year-old junior at York High School, found out just last year that he suffers from a genetic connective tissue disorder. Although Joseph feels fine and the disorder doesn't keep him from playing his electric bass or hanging out with his friends, his aorta is slightly enlarged. Biological testing revealed that he carries the trait for Loeys Dietz Syndrome, just like his father, Vincent. Joseph’s sister, 22-year-old Carmen, also carries the trait but is not displaying any symptoms.

Since his diagnosis, Joseph takes a daily dose of the prescription drug Losartan.

“That decreases my blood pressure,” he said. “According to Dr. (Hal) Dietz, who founded this, he said it opens up blood vessels to let more blood through, so there’s less stress on them.”

It also means Vitali has to avoid physical stress, which has curtailed his participation on the York Swimming and Water Polo teams. 

“I’m able to practice, but I can’t play in a game or swim at a competitive level because it’s too much stress,” he said.

‘It’s changed everything’

Life has changed considerably ever since Joseph’s dad wound up in the hospital with heart problems just after Christmas in 2009.

“I had dissection (a tear in the lining) of my aorta,” Vincent said. “That was the first inkling that I had a problem.”

Vincent underwent two painful surgeries: one last June to replace 5 inches of his descending aorta with a Dacron tube, and one last December to replace 3 inches of the ascending aorta with another Dacron tube.

“They were both life threatening surgeries, but thank God I’m still here,” Vincent said.

Joseph said watching his father go through the painful surgeries has been tough, especially knowing that he suffers from the same condition. 

“You think your dad, your parents, are in control of your life. You think nothing’s going to happen to them,” Joseph said. “Nothing can happen to them. Seeing my dad in crazy amounts of pain—it’s changed everything.”

Staying On Top of It 

Vincent remembers the day when Joseph received the news that he, too, had the genetic disorder.

“I think he was really upset. He was hearing a lot of things he didn’t want to hear, which was the things he couldn’t do anymore,” Vincent said.

But now, he says Joseph has bounced back, working his way around what Loeys Dietz Syndrome really means to him on a day-to-day basis.

“I think like any boy who’s 16, he’s living in the moment and hoping that none of this really makes a difference or negatively impacts him,” Vincent said. 

In the meantime, Vincent and his wife, Renata, do their best to remind Joseph to take care of himself to prevent problems in the future. 

“I wish I would have known beforehand,” Vincent said. “Maybe I could have stopped it or prevented it. That’s the lesson we keep trying to impart to the kids. You don’t have to have anything catastrophic happen if you stay on top of it.” 

'Lord of the Rings' Tour

This summer, through Make-A-Wish Foundation, Joseph and his immediate family will travel to New Zealand for a 10-day dream vacation touring the places where the "Lord of the Rings" movies were filmed.

“When we were younger, my friends and I had an obsession with the 'Lord of the Rings' series,” Joseph said. “The majority of those movies, and even the 'Chronicles of Narnia,' are filmed in New Zealand. We had a dream of all living together, buying a huge mansion and living on a beach in New Zealand. I’ve always wanted to see New Zealand and just witness it.”

Now that he’s actually going, Joseph still can’t seem to believe it. In fact, at first he was hesitant to accept the offer from Make-A-Wish. 

“I didn’t feel like I deserved it, because on the outside, I’m a normal kid. You have to know me to know that I have this (condition),” he said.

“We always pictured Make-A-Wish for kids with terminal illnesses,” said Vincent. “We said, ‘That’s not us.’ ”

But eventually the foundation convinced the Vitali family that Make-A-Wish is for any kid that has had a life-changing event or significant illness, and that Joseph certainly qualified.

“The people there are just amazing,” Vincent said. "I don’t know how they do what they do. They’re extremely thoughtful and the nicest people I’ve ever met.”

From April 11-24, Panera Bread, 108 W. North Ave., and other participating Panera stores in the Chicago area will donate 10 cents to Make-A-Wish for every Easter Egg Cookie sold. The proceeds will go towards fulfilling Joseph Vitali’s dream.