Rory’s Hero Fund was created to honor the bright spirit and boundless love of our sweet Rory. Inspired by the courage and joy Rory shares every day, we’re supporting research focused on Malignant Rhabdoid Tumors (MRT) — the rare and aggressive cancer that Rory bravely faced. Through this fund, we hope to bring more understanding, better treatments, and renewed hope to other children and families walking a similar path.

Rory was — and remains to this day — our beam of light. Always happy and content, he drew everyone in with his bright smile and brilliant blue eyes. He loved belly-laughing with his older brother, snack time, and touch-and-feel books. Sunday night movie nights and moments spent together at home between treatments have become our most treasured memories.

In September 2024, when Rory was just 4½ months old, a sudden bout of vomiting left him unusually lethargic, and we rushed him to the hospital. He faced critical interventions, including being intubated twice and undergoing emergency surgery to address ongoing bleeding in his liver. A few days later, we received the diagnosis we never expected: Malignant Rhabdoid Tumor (MRT).

Over the next several months, Rory bravely endured 13 rounds of chemotherapy. Early scans gave us hope, but the cancer persisted and spread despite treatment. We brought Rory to Boston Children’s Hospital to participate in a clinical trial. Sadly, he deteriorated rapidly upon arrival and passed away at 11 months old.

Throughout his short life, Rory’s courage, resilience, and love left a lasting mark on everyone who met him. We are forever grateful for the care and support provided by the teams at Children’s Minnesota and Boston Children’s Hospital. We hope Rory’s Hero Fund will help bring hope to other children and families facing MRT.

About Malignant Rhabdoid Tumors

Malignant Rhabdoid Tumors (MRT) are rare and aggressive cancers that most often occur in infants and young children. They can develop in the kidneys or in soft tissues throughout the body, as it did in Rory’s case. MRT is caused by mutations or loss of a tumor-suppressor gene called SMARCB1 (INI1), which disrupts normal cell growth and leads to rapid tumor development. Despite advances in pediatric oncology, MRT remains one of the most challenging childhood cancers to treat. Research is urgently needed to improve outcomes for affected children and their families.

(Source: National Cancer Institute, “Extra-cranial Rhabdoid Tumor,” cancer.gov)

Thank You

Thank you so much for helping us raise funds in honor of Rory. Whether you’re a friend, family member, or someone who shares our hope for a cure, your generosity means the world to us. Each contribution brings us closer to better treatments and more hopeful days ahead for children facing MRT. Please note that all funds raised through Rory’s Hero Fund are restricted to ‘Rhabdoid Tumor’ and MRT-related research projects.

#MRT Funding for Rory [founded November 2025]