CHESTERFIELD COUNTY, Va. — There are some people whose light shines so bright, it becomes nearly impossible to be upset in their presence. Their smile makes you smile. Their laugh uplifts, and their positive attitude fuels you even in the most difficult of situations.
For Katie Macri, her son John Paul has been that since the day he was born.
"He has just always had a big spark of joy inside of him," Macri said. "It's like he has this extra light that radiates out."
It is a spirit Macri says 9-year-old John Paul has maintained even through an extremely difficult diagnosis.
"They did a CT and they called me into the bad news room, as I call it, and asked to get my husband on the phone, and they told us that they saw a large mass in his brain," Macri said. "His diagnosis is DIPG, diffuse intrinsic pontine glioma. So what that means is that the tumor doesn't grow on, it grows in."
Because of its aggressive nature and placement in John Paul's brain stem, doctors said they could not go in and remove it and that there were very few treatment options.
"It felt like a bomb dropped on our life," Macri said. "What this disease does is it slowly takes away your child's ability to walk, to eat, to talk, to hear, to see. All while leaving the cognitive aspects of their brain intact, so they are literally being trapped inside of their own body until eventually it stops your heart rate."
According to the National Cancer Institute, DIPG impacts around 300 children a year across the country.
"The life expectancy for kids with a DIPG diagnosis is about nine to 11 months," Macri said. "That's with treatment."
Macri is part of the Tough2gether Foundation, an organization that helps families of children with aggressive brain cancers.
"We all just have a shared drive to want to fix this for our kids," Macri said. "You know we cannot keep this cycle going of families being told, 'I'm sorry, go home and make memories with your child. There's nothing we can do.'"
The Tough2gether mothers are now working to help fund two clinical trials they say shows significant promise but are on the brink of being shut down.
"The trial uses an oncolytic virus that they inject directly into the tumor," Macri said. "We know that rare diseases don't bring in big money. They don't get as much attention, and so that is our mission to make sure that rare is not forgotten."
More information on the clinical trial and ways you can donate can be found here.
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