Well before her diagnosis of FA, our daughter was a model in resiliency for us. When she was finally born, we called her Mighty Mouse. Small, but resolute. Our model of resilience. Our Norah.
As Duncan's mom, I wish I could give him more days. I’d give him mine if I could. But that’s not possible. I can only resolve to give some of my time to try to raise funds for research.
We first learned something was wrong in 2004. I was a normal, healthy kid until I went to my pediatrician for my 13-year-old booster shot and blood draw. That was the first sign something was off.
La Anemia de Fanconi se consideraba una enfermedad huérfana por lo poco frecuente y lo poco que se conocían sus causas, sus conexiones a otras enfermedades, y sobre la existencia de tratamientos.
Lynn Frohnmayer, FARF co-founder, has lost all three daughters to Fanconi anemia. At the 30th FA Scientific Symposium, she spoke about her family's story and three decades of progress in FA research.
Mary-Beth Johnson is a foodie and fantastic cook, a wife, sister and daughter, and a self-proclaimed over-sharer. She also lives with Fanconi anemia.