Justyne Lobello Works to Create a Powerful and Meaningful Legacy for Son With Help From the Minecraft Community

On November 22, 2023 Justyne Lobello’s world was turned upside down when her son, Kevin, was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), a rare and fatal form of pediatric cancer.

“[DIPG] is a long string of words that is the name of the tumor my son had. It basically means that it’s both contained and not contained,” said Lobello. “It’s very specifically in the pons of the brain stem which is the bulbous part at the top of the brain stem, and there is no cure.

The condition is always fatal and the two year survival are is less than 10%. Kevin lived sixteen months and one day after diagnosis, and it was a very difficult journey for our family.” continued Lobello.

Kevin was born in Macon, Ga in 2015 and was a completely normal kid before his diagnosis just eight years later.

“He was incredibly smart, it was almost scary… he was also just really empathetic and caring, he loves animals,” said Lobello. “Whenever I would get upset I would try to hide somewhere so he didn’t see me but he would come and say ‘Mommy everything’s gonna be alright’ and he was like 2 years old.”

“He was always a character; everything he did was eccentric,” continued Lobello.

Since Kevin’s passing on March 12, Lobello has made it her mission to build a powerful legacy around her son and bring awareness to DIPG in hopes of someday finding a cure.

“I think that if you do something innovative for DIPG other cancers will be a lot easier to cure as well,” said Lobello.

DIPG is a form of pediatric brain cancer that affects children between the ages of 5-11. DIPG accounts for 10-15% of all pediatric brain tumors and is always fatal. Due to its location in the brain, DIPG tumors are inoperable and difficult to treat.

By the time treatments like chemotherapy reach this part of the brain blood and spinal fluid filters out too much of the medication to effectively shrink tumors. While there is still research that has been done to figure out ways to help treat DIPG, the research is mostly targeted towards prolonging life and focusing on quality of life rather than treating the cancer.

“You can’t operate on DIPG… here in America they are too concerned about damage so they don’t typically do biopsies,” said Lobello.

“The other thing about DIPG that is very difficult when you’re trying to figure out what could’ve happened is that it is random,” continued Lobello. “There are no current genetic or viable factors that could’ve caused it, it seems to be very random.. So it can really happen to any child.”

In the world we live in, medical tests like MRIs are not part of a normal doctor’s check up, so it is rare that a brain tumor can be caught in the early stages. When a type of cancer like DIPG has no known causes it becomes even scarier.

“He never was sick,” said Lobello. “He was always a very healthy child, very smart and it happened to him.”

Lobello described that the summer before her son’s diagnosis his personality and demeanor seemed off, but there were no other alarming signs that could point towards cancer besides irregular movement in his left eye that Lobello hoped could be fixed by an optometrist.

“I just noticed that he was more, I guess muted in his personality,” said Lobello. “He was always a very active child… he just started to get more tired more often… around August when he started school we noticed his left eye started to move to the center of his face and that was the most obvious symptom.”

As time went on Kevin’s symptoms worsened and around Thanksgiving Kevin had received the diagnosis that every parent dreads.

“[Kevin’s Dad] called me when I was in the car with my family and told me that he was taking Kevin to the hospital, he [looked] like he’s had a stroke on his right side, and we got the diagnosis the next day,” said Lobello.
Doctor’s advised Lobello and her ex-husband to take Kevin home to enjoy the holidays before starting treatment after Thanksgiving.

“He went to radiation, we put him on an immunotherapy drug with a combination of chemo after that,” said Lobello. “He got reradiated November of 2024… and that kept him alive till March.”

Eventually, the treatment plan stopped working and the chemotherapy began to make Kevin extremely sick, so the tough decision was made to stop his treatment to maintain his quality of life.

Less than two weeks before Kevin’s passing, the opportunity arose for Kevin to see A Minecraft Movie in an early screening. As a rampant Minecraft fan, Kevin’s family was worried he would pass before the movie’s release in April.

One of Lobello’s friends who has worked as a snake wrangler on TV show and movie sets made a post on Crew Stories, a social media page full of behind the scenes film crew, to see if there could be a way to let Kevin see the movie early.

“She made it her mission to get somebody’s attention,” said Lobello.

Within 12 hours the Director of the film, Jared Hess was on the phone with Lobello making it happen. Kevin got to see the movie on March 1 with Sebastian Hansen, who plays Henry in the film, and spoke to Jack Black and Jason Momoa, the stars of the film over video chat before and after his private screening.

“There is no better thing you could’ve done for a child at the stage he was at with his diagnosis than bring him hope,” said Lobello.

Kevin was also showered with Minecraft merch and toys from companies like Mojang Studios, Lego and Mattel, but the support didn’t end there. On March 4, Lobello posted a video on Instagram showcasing Kevin’s experience seeing A Minecraft Movie and it immediately went viral. The Minecraft community along with the internet in general showed an outpouring amount of love and support for Kevin and his family.

“I just said ‘I am forever grateful #minecraft’ that was it, I didn’t make a lot of hashtags there was no catalyst for it going viral except for a few of the right people found it and started commenting,” said Lobello.
Lobello shared stories that highlighted Kevin’s joy in experience with the cast of A Minecraft Movie as well as what it meant for him to have this send off.

“That first call he had with Jack [Black] and Jason [Momoa], and they were just talking about breakfast food and Jack [Black] mentioned something about a breakfast burrito, and he was like ‘yeah my dad like breakfast burritos’ and then they started talking about this scene in the movie… and he was laughing so gutturally that he could barely breathe and his laugh was always really infectious,” said Lobello.

The traction and support that was gathered from Lobello’s viral post has helped drive her to create a meaningful legacy to help raise awareness for DIPG. She created a website, forkevin.org, that shares information about Kevin’s story along with information and resources on DIPG support and research.

“The biggest issue with DIPG or any rare disease is that people don’t talk about it because it’s rare,” said Lobello.

“There’s not a lot of funding for it because it’s rare, in medicine you always want to tackle the things that are affecting the most people, it’s just standard practice. Since 1962 all pediatric cancers had at least a 46% survival rate of 5 years or more, except for DIPG.”

In the website Lobello highlights what awareness means for DIPG. Some of that includes bringing in donations to research and free marketing so nonprofits can spend their funding towards research instead of marketing.

“A lot of people think awareness is a dirty word but it’s not when it’s something people don’t know about,” said Lobello. “What needs to happen is there needs to be awareness of the disease because even though it’s rare it is literally random, it can happen to any child at any time and the symptoms you look out for are minute until they’re not.”

Lobello hopes that people will join Kevin’s celebration of life which will be live streamed on April 12. Lobello is in the process of trying to get Minecraft streamers to stream at the event to highlight Kevin’s love for the game. Whether one likes Minecraft or not, everyone is encouraged to tune in to not only celebrate Kevin but to raise funds and awareness for all children who are currently suffering or have suffered DIPG.

“I would love for as many people as possible to join the celebration of life online, you can go to forkevin.org and sign up for free,” said Lobello. “The more people that go on there, they’re gonna want to sign up for the newsletter, I can update them on DIPG awareness and research and anything that is raised is going to ChadTough.”

With the power of the internet, global communities like Minecraft can work now to create legacies and form legends that last long after someone is gone.

“That whole community just really cares about their players and I just had no idea that this would happen, I’m really glad it did because now I can know that my son, even though he’s gone, he’s still making such an impact and that means a lot to me as his mother because it’s like he’s not gone,” said Lobello. “His presence will be felt forever.”