The Monster Has a Name

Today, it was confirmed that Harry has Emery-Dreifuss Muscular Dystrophy.  I can’t believe that this monster stealing his strength has a name.  It feels surreal and uncomfortable, but also final and reassuring.  Let me elaborate. Our first round of genetic testing was the myopathy panel.  Myopathies are the cousins of dystrophies, and they are different […]