Rory Belle’s Story
Rory’s Story
When Rory Belle joined our family in 2019, she brought a new light into our lives. Our son was overjoyed to become a big brother, and we—her parents—fell head over heels for our little peanut. She completed our family in the most beautiful way.
As Rory grew, her journey took us on an unexpected path. Over 17 months, we navigated new challenges together, from her struggles to grow, to constant vomiting, to seizures, to liver complications. Eventually, advanced genetic testing revealed mutations in both of her NARS1 genes—a condition so rare that even her incredible medical team was breaking new ground in understanding it.
Rory passed away peacefully in her home surrounded by family in 2021.
Looking to the Future
Today, Rory’s mom channels her love and purpose into The Rory Belle Foundation. She works tirelessly to support research into rare genetic disorders, striving to find treatments that improve the lives of children living with NARS1 and other conditions. Through advocacy, fundraising, and collaboration with the medical community, she is determined to honor Rory’s legacy by bringing hope and a brighter future to other families on similar journeys.
