Nora

Meet Nora – A Brave HLH Fighter

Nora is a bright and beautiful 2-year-old with silvery blonde hair (for now), a sweet giggle, and a quiet strength that inspires everyone around her.

She was diagnosed with Griscelli Syndrome Type 2, a rare genetic disorder that triggered her primary HLH (Hemophagocytic Lymphohistiocytosis), a life-threatening immune condition. On August 27, 2025, just one day before her 2nd birthday, Nora received peripheral stem cells from a generous unrelated donor at Johns Hopkins in Baltimore, MD. This transplant is her only chance at a cure.

Life in the hospital has been full of challenges- a lot of medications, central lines, feeding tubes, feeling yucky and long days- but also powerful moments of hope. Nora was even baptized during her hospital stay, a symbol of faith and strength for her whole family.

Nora has three brothers and a sister who love her dearly. In fact, her youngest brother has also been diagnosed with Griscelli Syndrome Type 2 and will one day need a bone marrow transplant of his own. She is being very brave and showing him that he too can fight this awful disease.

Both of Nora’s parents are family medicine providers, pouring all their knowledge and love into making sure she is well cared for. Still, Nora’s strength and courage is what shines most.

Nora will likely be hospitalized for another 4-6 weeks, awaiting on those cells to rebuild what was just destroyed with immunotherapy, chemotherapy, total body radiation, and more post transplant chemotherapy to reduce graft versus host disease. It will get worse before it gets better. The goal is to wait on those precious cells to engraft while dodging any and all infections, while preventing any organ damage in her body. We have no idea what the future holds but we are still showing up, smiling and forever grateful to have Nora in any capacity. She is such a beautiful soul and a shining light.