Hunter Syndrome 25 Jul 2013 IT Dose 23 at BC Children's Hospital It's done. 30mg of Elaprase floating around in Trey's brain in Vancouver, BC, Canada. There were a few hiccups, but it's done. That's all that matters. The doctors at BC… mcfadyena
Hunter Syndrome 22 Jul 2013 Letting Go Trey’s first local intrathecal dose was re-scheduled. That makes it sound simple. It was supposed to be today. Dr. Muenzer was booked to fly in, Joey Howell's Boys with Bigger… mcfadyena
Hunter Syndrome 09 Jul 2013 Phase II/III Intrathecal Trial Update The Phase II/III is getting closer! For those families who have been waiting, it couldn't come soon enough, I know. Here is an update of what I know: Dose: 10mg… mcfadyena
Hunter Syndrome 09 Jul 2013 First intrathecal dose on Canadian soil We have been traveling to North Carolina monthly for 22 doses. On Monday, July 22, Trey will receive his 23rd intrathecal dose as part of the MPS II clinical intrathecal… mcfadyena
Hunter Syndrome 16 Jun 2013 Redefining Beauty If only everyone could see Trey the way I see Trey... the kind, uber friendly, lover of sports and life, beautiful blue eyed kid that I love with my entire… mcfadyena
Hunter Syndrome 12 May 2013 Happy Mother's Day! I wrote this post a while ago, it's not about Mother's Day, but I felt compelled to post on Mother's Day, so here you are. This blog post is… mcfadyena
Hunter Syndrome 02 Apr 2013 The Unspeakable Emily Rapp, mother to a child with Tay-Sachs (a Lysosomal Storage Disease like MPS II) and author of the New York Times article entitled 'Notes From a Dragon Mom' (click… mcfadyena
Hunter Syndrome 27 Mar 2013 MPS II Research Fund Update Dear MPS II Research Fund Supporters, It has been almost a year and a half since our last major fundraiser for the MPS II Research Fund. A year and a… mcfadyena
Hunter Syndrome 04 Mar 2013 IMPORTANT J&J UPDATE! Johnson & Johnson has stepped up!! This would not have happened without your voices. We were loud and clear and J&J finally listened. THANK YOU. THANK YOU. THANK YOU. Here… mcfadyena
Hunter Syndrome 01 Mar 2013 Do the Right Thing Johnson & Johnson! Johnson & Johnson began responding today to the hundreds of emails MPS families and supporters sent to them on Wednesday and Thursday. If you sent an email to J&J, you… mcfadyena
