Hemophilia Events (45)

With eyes closed ;)!Body language / Consciência corporal: sentir os pezinhos pisando firme

SINCE BRUNO’S first visit 2 years and a half ago at our Hemophilia Center, I had participated with the young parents in the process of raising their first child with severe hemophilia A. Prevention of over protection, early self awareness, talking to the child even when very little about how to climb and getting down of [...]

Touching, stroking…gestures/ Delicadeza ao tocar

“Walden” 1969, frozen film frame number 15 : “my dream city 1966″ from JONAS MECAS http://picpal.com/mecas.html Tagged: love, red orange photography

Your Child Has Hemophlia!

I will never forget the day those words were spoken to me! All three times!

I have three sons with severe hemophilia A. With no family history this was quite A shock to us! Our HTC provided us with a wealth of information. We also found wonderful resources at our local hemophilia chapter as well as the National Hemophilia Foundation. One thing that helped me was being able to talk to other moms who had kids with hemophilia. However 26 years ago that was a bit of a challenge! I am thrilled to be part of Hemophilia Moms so I can share my experiences with all of you!

I was so frustrated all those years ago when no one could answer a question that I felt was pretty straight forwar. " How big is a bruise before it is a bleed?" I always got the same answer..."you will know!" Now how was I going to know? I had never seen a "bleed"! I barely knew what hemophilia was! However, when my son had his first bleed....I knew it! When he had his first spontanious bleed....I knew! As mothers we need to trust ourselves. Take advatage of all the resources that are available! Twenty six years ago I would have loved to be able to talk to other moms in my shoes with the click of a mouse!

How did you feel when your son was diagnoised? How did you know your child had a bleed?

Make it a great day!
Lori