Darien Boy, Cubs Fan Battling Rare, Inoperable Brain Tumor

DARIEN, IL — When Joey Ventimiglia was diagnosed with a rare, inoperable brain tumor, he was one of just five children in Illinois with that condition. Now, he's the only one of those five who is still alive and his family and the local community are rallying to give him access to trial treatments.

Joey's condition is called Diffuse Intrinsic Pontine Glioma (DIPG), which causes aggressive brain tumors in the glial tissue at the base of the brain and affects roughly 200 children in the U.S. every year. Because DIPG affects the lower part of the brain stem, it causes problems with breathing and heart rate. Over time, patients with DIPG become unable to talk, see, or swallow.

Joey —a baseball fanatic and flag football player— is still stealing bases and getting touchdowns as his parents hope for a miracle, but he sometimes gets wobbly on his feet.

Since his diagnosis, Joey's parents, Carolynn and Joe Ventimiglia, have poured everything they have into keeping their son alive. Their best option has been exploring Intra-Arterial Immunotherapy trial treatments that are unfortunately not covered by insurance. A trip to Monterrey, Mexico for a single round of treatments can cost up to $300,000, with the treatment alone costing $30,000 out of pocket, according to a GoFundMe started by Joey's family.

Paul Hoel, varsity baseball coach at Hinsdale South, said Joey and his family have been able to make it to Mexico for a handful of treatments, but that each trip takes a lot out of Joey. "He gains strength, but then he has to go and get treatment."

Hoel said Joey recently scored a touchdown in a flag football game, but was confined to a wheelchair when the baseball team held a special day for Joey, who dreams of one day playing high school baseball. The team lit up the scoreboard with Joey's favorite number, 44, for Anthony Rizzo as they all ran the bases, with Joey rounding the bases in his wheelchair.

“[Joey] actually walked across home," Hoel said. "He got out of his chair and took the three steps across home. It was pretty emotional."

To contribute to Joey's cause this holiday season, visit the Joey's Journey to Fight DIPG GoFundMe page.

>>Image via GoFundMe