Henrik

Henrik was just 15 months old when he was diagnosed with ATRT. After experiencing significant neurological abnormalities, an MRI revealed a golf ball-sized tumor on his cerebellum. Emergency surgery was required to relieve the pressure on his precious brain, and he was fitted with an EVD.

Transferred to a specialized pediatric cancer hospital, Henrik bravely endured a rigorous initial treatment plan: 12 blocks of chemotherapy (VCA, ICE, and DOX) and 30 rounds of ion radiation between April 2022 and October 2022. In October 2022, he successfully completed chemotherapy and was declared cancer-free, ringing the bell in celebration.

However, the battle was far from over.  A follow-up MRI ten weeks later revealed several tumors in his spinal canal. Despite the grim prognosis, Henrik’s family refused to give up. He began the challenging MEMMAT protocol and received radiation again, this time to the entire spine. And it worked! All the tumors were gone during the first MRI! The MEMMAT proved effective for 13 precious months. Henrik’s family shared, “We were so happy and confident that it would be enough this time.”

Sadly, the disease returned in February 2024, with a new tumor on the cerebellum and an "abnormality" on the cerebrum. While the cerebellar tumor was surgically removed, the cerebral abnormality required more innovative treatment. Henrik received radiation again, this time to his entire skull, and an MRI in the summer (2024) showed no visible tumor tissue. His care continued with a personalized long-term therapy regimen developed by doctors at KITZ in Heidelberg, who artificially regrew his tumor to test and develop a regimen involving four different medications, all to give Henrik more time.

In December 2024, Henrik’s doctors decided to pause his therapy until his next MRI the following February. Though his bone marrow regeneration was slower than expected due to the extensive treatment, he was blissfully tumor-free and recovering well, giving his family a brief period of cautious hope.

Despite the relentless battles, Henrik remained an incredibly happy child! Though he had not spoken since his initial diagnosis, he communicated effectively with a captivating light in his eyes. He could eat and drink independently and loved to walk and run. His greatest joy was playing with his two beloved brothers, Thorben and Marius. He loved dinosaurs, being outside, and Disney films—with Olaf from Frozenbeing his absolute favorite character!

Henrik faced an unimaginable trial with a courage that defied his small size. His family was unwavering in their love and devotion, doing everything in their power to help him have a full life.

Henrik passed away on March 14, 2025. He is no longer in pain and is now soaring, a guardian angel watching over his heartbroken family. Henrik’s light will forever shine in the lives of those who loved him.

Remembering Henrik Bernhart

December 17, 2019 ~ March 14, 2025