As a child in elementary school, I remember knowing a young boy who had "hemophilia" his mother said. A bleeding disorders so severe that he had to have transfusions often and spent months in the hospital. I really didn't understand what he endured (back then there was no real treatment) but I remember he was full of bruises, something I didn't understand.

How could never have known back then that I was a girl carrying the very gene that caused his hemophilia. There was no history of the disease and no one had it in our family until...

In 1996, I was a mother of 5, and my son was bleeding from the kidneys, without any injury. We discovered within 24 hours, he had Hemophilia B, or Christmas Disease. An identical twin who shared the very same DNA as his brother, I knew within a second, I had two sons affected. But a third was surely to be affected as that would make sense of all the issues we faced with injuries and mysterious bleeding episodes that never had a medical answer. Everyone missed the diagnosis for 9 years, until that day in November when it all made sense.  Like 33% of all families who suddenly find themselves overwhelmed with a new and extremely rare diagnosis of Hemophilia, for us Hemophilia B, affecting approx. only 4000 people in the whole US, well, you get the picture of my 2 years of diagnosis anxiety.

Skip now to over 25 year later, my family and children thrive, despite that diagnosis so long ago. It hasn't been easy, nor without fears and tears, but with a village of community support, like the one I lead today at BDASC we are resilient and "LIMITLESS" in what we can achieve, when we believe...