“All of a sudden, everything went backward!” Bjarne’s father, Henrick, recalls the difficult time about seven years ago when his son suddenly began to regress developmentally. He could no longer walk properly, held his head at an angle, and drool was running from his mouth. When the doctors discovered his son’s brain tumor, Bjarne was just two years old. Henrick reflects: “The scans of Bjarne’s skull showed that something the size of a tangerine was growing in his head—something that didn’t belong there.”
For seven years now, Bjarne has been living with his brain tumor, which is located near the brainstem: a so-called pilomyxoid astrocytoma. Chemotherapy, surgeries—Bjarne has undergone a long series of treatments, some of which had significant side effects. And there were setbacks time and again. At one point, Bjarne was considered to have exhausted all treatment options—the usual treatment methods had been exhausted, and the tumor kept coming back.
Molecular diagnosis changes everyhting
A few months ago, Bjarne came to the Hopp Children’s Cancer Center in Heidelberg (KiTZ). The team led by Olaf Witt, one of the three directors of KiTZ, used a novel diagnostic method to sequence the genetic material of Bjarne’s tumor. It turned out that the astrocytoma had a very specific molecular alteration—an alteration that could also serve as the target for a novel therapy. About two months after the genomic analysis, the phone rang at Bjarne’s family’s home: “On the other end was a doctor who was crying,” recalls his sister Ava (11) in an interview with the BILD newspaper. The reason: There is, after all, a treatment for Bjarne. A treatment that specifically targets the location of the tumor’s molecular alteration.
Since then, Bjarne has been receiving the new medication. And shortly thereafter, MRI scans showed that the tumor was “responding”—that its growth had been halted. “The tumor appears to be under control at the moment,” says KiTZ Director Witt. “This treatment success gives us hope, even though we cannot predict at this point whether the therapy will cure Bjarne permanently.”
Bjarne Attends the ZDF Charity Gala “Ein Herz für Kinder” (A Heart for Children)
With this new, targeted therapy, Bjarne has a chance to recover and lead a completely normal life. “We’re grateful for every day we have,” says Bjarne’s father. “The physicians in Heidelberg have worked a small miracle for Bjarne,” says World Cup champion Philipp Lahm, who accompanied Bjarne as his mentor on the show “Ein Herz für Kinder” in late 2022. Lahm visited Bjarne at KiTZ and even played a game of soccer with him on the nearby sports field. “It’s amazing what the doctors here are accomplishing,” he said, summarizing his impressions from the visit.
View the video about Bjarne from „Ein Herz für Kinder“ (in German)
View the ZDF report (in German)