Inhibitor Summit II, East Coast, Washington DC

Rising or Setting…the Sun is my star/ Amanhecendo ou se pondo, o Sol é minha estrela

Cada dia é uma oportunidade para “encarar” este mundo nosso, com seus momentos malucos de alegria ou de penas…momento  de revisão, re-visitação onde o velho de ontem pode ser incorporado ou descartado…o novo pode ser bem recebido ou evitado…muito depende de nosso olhar. Abraço! Each day is an opportunity to “face” this world we live in…with [...]

Raising our child in the middle of bruises and visits to the center… Educando nosso filho entre um sangramento e visita ao ambulatório…

As parents we know that our children will have to face the days at school, later college, first job, first love… it’s an endless list of happenings, of events that we can’t control. But what  we can do  is to transform an event into a SIGNIFICANT EXPERIENCE. If you change the idea you have about your [...]

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