Hunter Syndrome 04 Nov 2013 An Open Letter to Parents of Typical Kids ‘Everyone you meet is fighting a battle you know nothing about. Be kind. Always.’ If everyone walked the earth living by this quote, there would be no need for this… mcfadyena
Hunter Syndrome 25 Sep 2013 $110,000 Research Grant Funded! The Canadian MPS Society Board of Directors has supported our decision to fund a $110,000 research grant over two years to Dr. Douglas McCarty from Nationwide Children's Hospital in Columbus,… mcfadyena
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
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
