Author: Deena

Goodbye summer, hello school! Every year I used to get very anxious around this time of year hoping Tyler would get a good teacher. But more importantly that we’d have a great nurse.  For me, the school nurse was my number one concern. Before school had started, I would reach out, introducing myself and letting her/him know that I’m excited to be … Continue reading The School Nurse, Your New BFF

When Tyler was almost six, his doctor decided to attempt to desensitize him to his allergy to Factor 9 (his clotting medicine) by connecting him to a CAD pump which would run 24/7. In order to do this, he needed a Broviac port which consisted off a tube hanging out of his chest and connected … Continue reading Kids Just Wanna Have Fun

Raising a child with a bleeding disorder can be very scary when they are young. As a parent with no family history, I had no idea what to expect. When Tyler started walking at 9 months, I went into a panic. How could I keep him safe? What if he hits his head or falls … Continue reading The Boy in the Bubble

Twenty years ago, my son, Tyler, was born with severe Hemophilia B. We had no family history so it was quite a shock. I was terrified. The hospital told me he had “Christmas Disease” which didn’t sound so bad; “Christmas" is good, right? We stopped using that term very quickly! At seven months, Tyler had … Continue reading Living with Hemophilia B & an Inhibitor

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