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Jacksonville 11-year-old diagnosed with a rare form of cancer that has no cure

JACKSONVILLE, Fla. – Eleven-year-old Corey Kerrin is just like any other kid his age. Fun, energetic, loves TikTok and getting a fresh haircut.

He’s also an artist.

“This is my favorite one, this is Jacksonville,” Kerrin said. “When you go downtown in Jacksonville, you see the green and red bridge.”

Drawings have been a bit of a challenge recently. Kerrin has been diagnosed with a rare form of cancer called DIPG, which stands for Diffuse Intrinsic Pontine Glioma. Right now, there is no cure for DIPG.

Drawing by 11-year-old Corey Kerrin (Shanika Safford)

Kerrin’s eyes shift to the side, even while his head faces front. His mom Shanika Safford noticed it earlier this month.

“I took him to the doctor because he would turn to the side when he’s trying to look directly forward,” Safford said. “So I said, ‘Baby, look at me directly, in my face.’ He said, ‘I see two of you.’”

11-year-old Corey Kerrin (Shanika Safford)

The doctor told Safford to take him to the emergency room. There, they learned Kerrin has DIPG. It’s a type of brain tumor found on the pons of the brainstem -- commonly found in kids.

RESOURCES: Children’s Oncology Group | International DIPG/DMG Registry | DIPG facts | Gliomas for parents--Nemours Kids Health | GoFundMe for Corey Kerrin

Darren Klawinski, Kerrin’s pediatric neuro-oncologist, says Kerrin’s symptoms are common for kids with DIPG.

“When I first met him, I was standing on his right side,” Klawinski said. “And he asked me to move in front of him, because if he looked to the left or if he looked to the side, he said he sees double.”

Data shows about 150 to 300 patients are diagnosed with DIPG in America per year. The median patient age is 6 to 7 years old. This is not a tumor that can be removed — something Kerrin’s mom has trouble explaining to her son.

“I could have never imagined that I would have thought -- maybe some glasses, maybe some thick glasses -- but, however, not that. To have to explain that to an 11-year-old, he doesn’t understand that,” Safford said. “And I just had to do it the best way I knew how without going into the depths of everything that’s eventually going to unfold.”

Not even targeted chemotherapy can benefit this condition. Kerrin has radiation, doctors visits and takes medication to possibly shrink the tumor.

When asked how he feels, he replied, “I feel, I don’t really know. The medicine, it makes me feel sleepy and I can’t stand for that long.”

Klawinski explained the condition.

“Because it is growing throughout that portion of the brain stem called the pons, you would essentially have to take out the brain stem, which is not compatible with living,” he said.

11-year-old Corey Kerrin (Shanika Safford)

The 11-year-old leans on his family -- lots of brothers and sisters and cousins who always check in. He wears a chain around his neck, with wings and a picture.

“I love you, dad,” Kerrin said. It honors his father who passed away in August.

“He’s watching over you,” Safford said while the boy cried.

He misses his father, especially now, but says he feels his love.

“My dad, we used to ride dirt bikes together,” Kerrin said.

When asked how he stays so strong, Kerrin answered, “Strong? Oh, my mom and dad and my brother.”

“His brothers and sisters and everybody wants to enjoy life with him,” Safford said. “So that’s what we are looking forward to in the future.”

Kerrin’s family promises to keep him comfortable. He promises to keep being strong, and to keep drawing.

He says he feels loved “all the time.”

Kerrin’s mother says she’s looking for people who are sponsoring awareness for this condition, because she wants to be a part of it. The family has set up a GoFundMe where you can help with Kerrin’s medical expenses.

Drawing by 11-year-old Corey Kerrin (Shanika Safford)