VICTOR, N.Y. — The answer, to Tedy Wagner, was simple. 

He and his family had learned from a University of Pittsburgh Medical Center cardiologist that Tedy, a 9-year-old "all boy" athlete from Victor, would need a heart transplant. 

"And well, he’s like `let’s just get one,' his mother, Robbie Wagner, remembers. “He doesn’t know where they come from. He does not know the severity of it."


What You Need To Know

  • Tedy Wagner, 9, and his family learned in the fall that Tedy would need a heart transplant

  • Tedy suffers from restrictive cardiomyopathy

  • Restrictive cardiomyopathy is most common in older people

  • Community members, from Tedy's neighborhood to his sports teams, formed Tedy's Team, which has raised awareness about his condition
  • 26Shirts, the Buffalo-based charitable non-profit, designed a "Back To Billievin" shirt to recognize Tedy's battle for a new heart

Her son's response to his journey through a diagnosis of restrictive cardiomyopathy has helped Robbie and her husband Brian and their daughter Morgan stay strong through a more than eight-month mission to return Tedy to health.

"Everything was just taken from him in one day. Shut down," Robbie said.

"I think I was in denial saying no let’s just go and get another opinion," said Brian. 

The second opinion confirmed Tedy's heart was, in fact, hardening. 

The American Heart Association defines restrictive cardiomyopathy as a condition brought on when the heart's ventricles become rigid with abnormal tissue, such as scar tissue.

The heart's ventricles no longer relax and fill with blood. It leads to enlarged atria. Blood flow in the heart declines. The condition causes heart failure or arrhythmias.

Once diagnosed, Robbie and Brian expected their son to be entered onto UPMC's heart transplant list. That didn't happen.

“He was too well," Robbie said. "He was too healthy.”

As the Wagner‘s settled in for what could be a very long wait to get on the transplant list, help started arriving from everywhere. Teachers, coaches neighbors, sports teams all formed Tedy’s Team.

"We were like it was so crazy it was so crazy," said Robbie.

What started with well wishes and meals grew to a fundraiser at a lacrosse tournament that raises money for those with cardiomyopathy. 

Victor grad and Syracuse University lacrosse player Jamie Trimboli stopped over with a signed Orange lacrosse helmet. Even SU lacrosse legend Casey Powell paid a visit.

"And Casey said to Teddy, he said 'look you’re gonna come out on the other side of this a better person. Don’t give up,'" Brian said. "And it’s stuff like that, that kind of helped him move along."

Tedy’s not interested in just sitting around. Or talking about what he’s going through. Half a dozen times during our conversations with his parents, Tedy chose not to speak with Spectrum News

And even though he can't play football, basketball and his favorite sport, lacrosse, he does want to stay in the game. So when neighbors bought him a new set of golf clubs he took his first golf lessons.

"What is so amazing about this," Tedy said while grabbing lessons in Victor.

"This will be great to keep him in with his buddies. I mean, that’s a fear you know we don’t want him to lose his friends," Robbie said. 

Since picking up the game, Tedy had a setback that landed him in the hospital. That episode also led him back to Pittsburgh where doctors placed him on a heart transplant recipient list.

Robbie knows she and her family will need Tedy's team now more than ever. 

"You know they all got T-shirts Ted’s team and the one boy that lives here in the neighborhood every time I see him he’s wearing a red cardiomyopathy sweatshirt on or he has a Tedy’s Team shirt on. Always supportive of Ted," she said.

In mid-May, Tedy's Team welcomed the support of 26 Shirts, the Buffalo-based non-profit that raises charitable contributions through t-shirt sales. Its founder, Del Reid, agreed to create a shirt dedicated to Tedy. The model, a "Back To Billievin" t-shirt, is, like many of the shirts, a call to BillsMafia, the network of Buffalo Bills fans co-founded by Reid. 

You can find a link to the shirt sale here