Hemophilia Federation of America is a national nonprofit organization that assists, educates, and advocates for the bleeding disorders community.
I have seen signs for the last few years, but on a cold day just before Christmas, I saw my 14-year-old son not as a little boy, but as a young man. There wasn’t anything extraordinary happening in the moment. He sat at one end of our sectional couch and I was sitting on the […]
With a new diagnosis of hemophilia my world was turned upside down. What’s only been 4 months since Maddox was diagnosed feels like a year or two. I feel like I’ve grown so much in just a few months. I have put my life vest on and jumped right in. While, sometimes I’m afraid […]
Dear Port: Over the past five years you were a big part of how well I did infusing my son, Laithan. As much as he would fight me during infusions by moving around, I knew that I could always count on you to work. Don’t blame yourself for having to be removed! In five years […]
I was cleaning out my closet recently and found an old picture of Nick stuffed in the pocket of a purse. My first thought was, “Man, he was a cute baby.” My second thought was, “That was right before he had a spontaneous epidural bleed.” Nick was eleven months old, in daycare, and not walking […]
We have all heard the clichés about needing a manual for parenting but one doesn’t exist. Parenting is hard, exhausting work. Hemophilia parenting is a whole other dimension; one that vaguely looks so surreal that it cannot possibly be the way we live. I remember the doctors, nurses and other HTC staff members loading us […]
The Cleghorn family shares their story of having a young child with hemophilia. They talk about prophylaxis treatment and transitioning from a portacath to to a vein.
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