Hunter Syndrome 24 Aug 2013 The Pot of Gold, Part Two: Compassionate Access There is NO question that intrathecal drug is working wonders for Trey. He is learning, he is happy, and he is living. In my previous blog post, I noted that criteria… mcfadyena
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
