I-Team: Chad Carr's legacy - WNEM TV 5

I-Team: Chad Carr's legacy

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(Source: ChadTough Foundation) (Source: ChadTough Foundation)

It’s been nearly two years since Tammi Carr got a kiss from her little boy.

Nearly two years since she heard his sweet voice.

"This little boy impacted more lives in five years than most people ever do," she said.

Her son Chad Carr lost his battle with pediatric brain cancer on Nov. 23, 2015.

Chad had diffuse intrinsic pontine glioma. He fought DIPG for 14 long months, all with a smile and that contagious laugh.

His parents were told he wouldn’t win. He couldn’t win because there’s no cure, not even a treatment plan.

That’s why the Carrs began the ChadTough Foundation, to fund research to find a cure.

"People say, ‘why? It’s 0 percent survival. Why am I gonna give my money there?’ That’s why. Because you have to try. You have to start somewhere. And there’s a lot of room for growth and we’re gonna make a dent in this thing," Tammi Carr said.

And they did. In September, doctors made a breakthrough after studying Chad’s tumor.

"This is like finding a needle in a haystack," said Dr. Rajen Mody, senior author of DIPG Discovery.

The study at Mott Children's Hospital was one of the first big projects for the ChadTough Foundation.

Doctors discovered a mutation in the PTEN gene.

The PTEN gene normally keeps tumors from growing. When it's mutated it allows cancer to thrive. 

This discovery is significant, not only because it might lead to a cure, but doctors believe it may also offer insight into what causes DIPG.

"For about 40 years of research we have made zero progress in DIPG cure and it is still a universally fatal disease. Most patients die within 10 to 14 months from diagnosis, so discoveries like this are going to be small steps forward," Mody said.

He said one of the first big steps he hopes will come from this is encouraging other DIPG families to do what the Carrs did by allowing doctors to study Chad's tumor after he died.

"When I think about what it’s gonna look like 10, 20 years from now, I know, I believe that he will be a huge piece of this puzzle in finding a cure," Tammi Carr said.

Even though she misses seeing Chad playing in the living room with their dog Tootie, and dancing with his brothers, she said her family feels blessed to know through all of the pain Chad’s purpose on earth was part of a much bigger plan.

"So many people never get to see that picture and we at least get to see a little part of it to see how our story, how Chad’s story, is in the big picture of things for such a small piece of God’s big picture," Tammi Carr said.

As the Carrs continue to fundraise for ChadTough, Tammi Carr said she knows Chad is cheering them on.

"He’s looking down on us and smiling. We see the bricks laid out in front of us for the next step and he’s doing that. He’s showing us the way. We’re just following his lead," she said.

The National Cancer Institute designates 4% of its funding to pediatric cancer, so even less of that goes to pediatric brain cancers like DIPG.

To bolster efforts to find treatments, the ChadTough Foundation is teaming up with the Michael Mosier Defeat DIPG Foundation to create a center at Mott Children's Hospital dedicated to pediatric brain cancer. They've raised $20 million of the $30 million needed.

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