Hunter Syndrome 23 Aug 2013 The Pot of Gold, Part One: Intrathecal Efficacy As defined by Doctionary.com, a pot of gold is ‘the realization of all one’s hope and dreams.’ At this point in time, with the only option for saving the brain… mcfadyena
Hunter Syndrome 20 Aug 2013 Dreams Really Can Come True Do you remember the woman who tracked us down for Mr. Brad- red Jeep- McRae? Well, after the AMAZING red Jeep day, this wonderful woman- Lisa Stirling- asked us if… mcfadyena
Hunter Syndrome 10 Aug 2013 My Limited Edition I got a Bachelor's Degree education in trashies today. Trashies are a kids toy, of which there are many, that you can trade, have different levels of value/worth, and are… mcfadyena
Hunter Syndrome 04 Aug 2013 The Red Jeep One of the beautiful pieces of MPS is that we regularly get to meet amazing people. MPS definitely draws a line. People who fear difference and atypical fall away and… mcfadyena
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