It seemed like the more research FARF funded and the more we learned, the more tantalizing was the possibility that somewhere out there might be a drug that could turn FA into a manageable condition.
The fear, concern, vigilance, and practices that the world is currently struggling to adopt have been part of your daily life and mine for years.
Through donating to FARF, I hope and pray to find a cure for Emily and all those who suffer from this terrible disease.
Several months ago, our daughter Bella undertook a very special sewing project: a t-shirt quilt. These weren't just any t-shirts, though. They were special and truly irreplaceable...
Thirty years ago, I was told that I had an incurable terminal illness called Fanconi anemia (FA). Doctors told my father I wouldn't live into my 20s. I'm now 44.
If anything positive comes from any of this, I hope it is that by recognizing our complete helplessness towards mortality, we begin to look upon everything that surrounds us as a reflection of our own