‘Lit up any room.’ Macon community mourns 9-year-old who died from rare brain cancer

The Macon-Bibb community is mourning the loss of a 9-year-old who was diagnosed with a rare brain disease.

Kevin Lobello, a third grade student at the Academy for Classical Education, died on March 12 from diffuse intrinsic pontine glioma, a rare brain cancer that mainly affects children, according to his obituary.

“Kevin lit up any room he walked into, and his smile was contagious,” the obituary reads. “He loved Legos, especially building them with his mom. One of Kevin’s favorite Lego memories was building a custom train with a Master Builder at Atlanta’s Lego Discovery Center.”

Kevin was diagnosed with cancer in November 2023.

“It’s been a journey,” Justyne Lobello, Kevin’s mother, told The Telegraph. “We’ve been grieving for a very long time, but as a parent, I’m also relieved that he’s not suffering anymore because that was really hard to see for a year and a half — just the confusion in his eyes when he doesn’t know why this is happening to him.”

Diffuse intrinsic pontine glioma (or DIPG) is an aggressive, fast-growing brain tumor that about 300 children in the U.S. are diagnosed with each year, according to the Dana-Farber Cancer Institute.

“Kevin’s dad and I, what we want to see is a cure for this cancer in our lifetime. It’s very rare, and nobody talks about it,” Justyne Lobello said.

John Lobello, Kevin’s father and also a teacher at the Academy of Classical Education, said his favorite memory of his son was him reading and talking at an early age, as well as consoling other students when needed.

“He was a free kid. I feel like he had a lot to offer,” he said. “One of those things everyone talks about when someone who was young dies is that it not only steals away the kid he was, but it also steals away the kid he could have been.”

Kevin Lobello was brilliant, and a Minecraft fan

The Academy for Classical Education, also known as ACE, changed its Facebook page’s profile picture last week to a smiling image of Kevin as a way to honor him.

ACE administration said Kevin was well-known at school for his sense of humor, extreme kindness and outgoing personality. Kevin’s death has deeply affected students in every grade level, ACE administrators told The Telegraph.

“He was brilliant,” said Esterine Stokes, co-founder and chief academic officer for the charter school. “It didn’t matter what age you were. Kevin could carry on an intelligent conversation with you whether you were eight or 40.”

Kevin, who was a big fan of “Minecraft,” also received nationwide support. CrewStories, a media collective, arranged for Kevin to watch a private screening of “A Minecraft Movie” in early March with actor Sebastian Eugene Hansen. He also got to meet actors Jack Black and Jason Momoa, fulfilling his last wish before his death, Justyne Lebello said.

“He’s definitely somebody that’s going to be missed,” ACE Principal Lara Relyea said. “It’s hard on everybody, but as an ACE family, we’re going to get through it all together and rally around Mr. Lebello and his family as much as they need.”

Advocate for your children, Kevin’s dad says

John Lobello said the school’s aid has been remarkable since the beginning of Kevin’s diagnosis, noting fundraising efforts to cover medical expenses and daily tasks such as lunch duty at the school.

“It’s just been overwhelming — the outpouring of support, not just for Kevin, but also, for me and for Kevin’s mother and my wife, has been unbelievable,” he said, emphasizing that he wants the community to remember Kevin by continuing to show love and kindness to others.

John Lobello also advised families who are dealing with pediatric illnesses to continue advocating for their children and asking questions.

A memorial service for Kevin was held on Thursday at the First Presbyterian Church. Laura Perkins, founding principal of the Academy for Classical Education, spoke at the service, according to the obituary.