Caregivers,I see you watching your person even more closely than before, noting the way he breathes, questioning if it seems more shallow than normal.I see you reading between the lines of every article, trying to discern just how bad this...
Stories
We asked Kathy to tell us a little about what motivates her to support FARF: “My niece and goddaughter, Emily Mitchell, is an FA child. I’d like to tell you a little about her. She was born prematurely in 2008...
Stories
Piper was the first friend Bella’s age that she lost to the same disease she has. It hit us all hard when the FA community lost Piper, but it absolutely devastated a then 11-year-old Bella. To this day she cannot...
Stories
Thirty years ago, I was told that I had an incurable terminal illness called Fanconi anemia (FA). My father was alone when he received the diagnosis and was told not to tell the nurses, as the news would be too...
Stories
This article was originally published in the FA Family Newsletter (Spring 2015). If you were to dance your life, what would it look like? A close friend posed this question recently and despite a host of hip hop and ballet...
Stories
Going out in public has always been a way for me to feel connected to the whole. Even if I wasn’t talking to anyone, just being surrounded by other energies and close proximity brought me both joy and the feeling...
Stories
