Mathias

Mathias Warne, affectionately known as “Super Mathias,” was diagnosed with ATRT in October 2023 at the age of three months. Prior to his diagnosis, Mathias exhibited several concerning symptoms, including increasing fussiness, frequent vomiting (which escalated to projectile vomiting in the week leading up to diagnosis), increased head circumference, and eye sundowning caused by hydrocephalus.

Mathias was diagnosed with atypical teratoid/rhabdoid tumor (ATRT), a grade 4 central nervous system tumor. He underwent a brain posterior fossa resection to remove the tumor, which was located in the brainstem and cerebellum.

Following surgery, Mathias received the ACNS0333 protocol treatment. 

Mathias demonstrated remarkable resilience throughout his treatment. He underwent a total of 10 surgeries, as well as five chemotherapy cycles with three stem cell transplants. His MRIs during that time remained stable, and he continued to nurse exclusively throughout his treatment.

Despite these successes, Mathias faced significant challenges. He battled a bone flap MRSA infection and continued to experience hydrocephalus until he was able to receive a shunt.

Mathias relapsed in January of 2025 and then proceeded to be part of a clinical trial for a few weeks. Unfortunately, that didn't do what his family was hoping, so he then went through 15 days of proton radiation. His family then got to enjoy 28 beautiful days at home before he was admitted to the PICU, where he fought a lung infection for 10 days before he passed peacefully and joined God in heaven.

Mathias was a true warrior, continuing to inspire all who knew him.