At Christmas 2022, Lorelei “Rori” Robertson, was diagnosed with Dyskeratosis Congenita and Revesz Syndrome, a rare and severe telomere biology disorder. Just months later, Rori underwent a bone marrow transplant. For the next three years, her family was blessed to watch her grow, laugh, learn, and simply be a kid. Then, in 2026, everything changed again. Rori’s oxygen levels began dropping with activity and eventually even at rest. She became increasingly tired and struggled to do the things she once loved. After months of testing, her family learned that she had Hepatopulmonary Syndrome and needed another life-saving transplant. On July 9, 2026, Rori was officially listed for a liver transplant.
Now, they wait.
They wait for the phone call.
They wait for a liver match.
They wait for the chance to bring their girl home healthier.
While other children are starting kindergarten, Rori is in the hospital waiting for her second transplant and the chance to finally start school. Rori has already endured more than most people could imagine, yet she continues to be their giggly, loving, determined little girl. Her family doesn’t know when the call will come or what the next chapter will look like. So they wait. They hope. They pray. And they keep fighting alongside their brave girl.
