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
Hunter Syndrome 28 Feb 2013 I Will Fight For You This song is for Trey, for Jamie, Melissa, Andy and Ellen, for MPS parents, and for all parents who would do anything for their kids. [youtube] Our battle with Johnson… mcfadyena
Hunter Syndrome 23 Feb 2013 Johnson & Johnson's Damage Control On Wednesday, February 20, Johnson & Johnson (or more specifically, Janssen Pharmaceuticals, who is a company of Johnson & Johnson) told Andrew McFadyen of The Isaac Foundation that they would… mcfadyena
Hunter Syndrome 22 Feb 2013 Johnson & Johnson: Indifferent, Unethical, Immoral This is a picture of Ryan, Trey, and I moments after Trey’s birth. If you are a parent, you can probably remember and feel that moment, what it was like… mcfadyena
