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 7 Comments
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 1 Comment
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 1 Comment
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 1 Comment
