Hunter Syndrome 30 Oct 2006 No answer regarding ERT funding Assistant Deputy Minister of Health, Bob Nakagawa, did not give us an answer today regarding the funding of Trey’s ERT through the BC government. We are very disappointed. He had… mcfadyena
Hunter Syndrome 29 Oct 2006 In a Writing Mood I don’t have too much to update, but I’m in a bit of a writing mood, so I thought I’d tell you about the little that is going on. Dr.… mcfadyena
Hunter Syndrome 27 Oct 2006 So Frustrating This whole world of medical services, funding, and the Canadian Health system in general is so frustrating. It is like no one cares that Trey is this beautiful little boy… mcfadyena
Hunter Syndrome 27 Oct 2006 Funding… MSP has told us that they do not pay for any Stem Cell Transplants (Cord Blood Transplants fit into that category) because they are still experimental. Now we’re onto the… mcfadyena
Hunter Syndrome 24 Oct 2006 Duke Update So we have a few updates. Our appointments at Duke and UNC are finally booked, thanks to our awesome doctor up here, Dr. Stockler, and the great staff down at… mcfadyena
Hunter Syndrome 23 Oct 2006 CBT Possibility at BC Children's We found out today that there is a possibility Trey could have a CBT done here at BC Children’s Hospital (BCCH), if that is the route we choose to take.… mcfadyena
Hunter Syndrome 17 Oct 2006 So much to think about… We’re still waiting on appointment times at Duke. Dr. Stockler just sent down Trey’s tests to Duke and UNC Thursday, so we’re waiting for the doctors down there to go… mcfadyena
Hunter Syndrome 11 Oct 2006 Our Upcoming Duke Visit So there’s not a lot to update, although we have been very busy. I have been talking with Duke about CBT’s…everything about CBT’s: what the procedure is, how it works,… mcfadyena
Hunter Syndrome 02 Oct 2006 Cord Blood Transplant? Some new considerations have entered our world. A mom whose son was recently diagnosed with Hunter’s Syndrome has gotten me onto Cord Blood Transplants (CBT). It’s a relatively new procedure… mcfadyena
Hunter Syndrome 02 Oct 2006 New Considerations We are considering a cord blood transplant for Trey, so here is the low down on the procedure. A Cord Blood Transplant means that Trey would receive a transfusion of… mcfadyena
