Losing Brandon

Over the past few years I have for the most part dropped out of the Holoprosencephaly support community.  After setting up and running an email message board for a few years, I have slowly found myself posting and reading less frequently.  As day-to-day care for our HPEkid became more routine and other aspects of our life began to take over I have really lost touch with most the families of children with HPE who I had come to know in the early 2000's. Last night, via Facebook, I learned of the passing of 13-year-old Brandon. Brandon was the first other child with HPE my wife and I had ever met.  We were living in Maryland (this was probably around 1999) and had at that point made email contact with perhaps 3 or 4 other families from across the country.  We learned that Brandon and his mom would be coming to Baltimore to see the HPE experts at Kennedy Krieger institute, so we drove an hour up I-95 after work to meet them.  Brandon was just a baby, definitely under one year of age, and there were some physical differences in how his HPE expressed itself, but it was so uplifting to see another living child when so much of what we were reading about HPE was truly dire.  He shared our HPEkids engaging smile and we instantly felt a connection to Brandon's parents; the camaraderie of knowing we were each going though similar experiences.  We met Brandon and his family two more times, at HPE Conferences held at NIH in Maryland.  I'll always remember him showing up in the hotel lobby one night with his wheelchair tricked out as an army tank.  Now, it has probably been 6 years or more since we've spoken to Brandon's parents and really been up-to-date on his life. So last night, after learning of Brandon's death I went on the HPE group discussion board to post a comment.  I did some searching of the archives and found that another of the very first living HPE children I ever knew (Zuzu Smith, from England whom we never met in person) had also died some years ago.  I had come to grips early on with the fact that children with HPE can die from any number of complications early in life.  But it is sad to learn that some of the "old guard" children, whom we met in the early days, have also passed.  We've become complacent, I suppose, feeling that our HPEkid is stable and will remain this way forever.  This news brings me back to earth to face the fact that HPE and it's attendant complications can always throw surprises our way.