My wife, Jolandie, and I had a pretty good thing going back in our hometown of Mbombela, South Africa. By age 25, I had successfully owned and operated two reputable businesses, had a lovely home, and plenty of people we...
Stories
News
Hola FAmilia ?? my name is Mary-Beth. At this year’s FAdult Meeting in Chicago, we did something special one day. I took over FARF’s Facebook on the first day of the FAdult Meeting to share a little behind the scenes...
Stories
In my early high school days, I noticed that I had a knack for biology, and specifically, genetics. It has always made sense to me and it sparks joy in my life. I know what you’re thinking – very nerdy....
Stories
Our Mighty Mouse Well before her diagnosis of Fanconi anemia (FA), our daughter Norah was a model in resiliency for us. Born at just five pounds and three ounces, she had the strongest heartbeat on the hospital floor, surprising us...
Stories
Do you make resolutions for the New Year? I used to, but they wouldn’t last very long, so I found myself making new, monthly resolutions. This technique is a variation of a technique I learned in my twenties. My employer...
Stories
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. After a bone marrow...
Stories