Hunter Syndrome 06 Jan 2010 PT/OT Hello again, During Trey's infusion today, Trey's PT (physio) came to see us with Dr. Stockler. Dr. Stockler has been very interested in this part of Trey's care because of… mcfadyena
Hunter Syndrome 06 Jan 2010 Orthopedics & Osteopathy We had an early and long morning yesterday, with a number of different appointments. After a few years of experience, we have started booking our yearly orthopedics check up as… mcfadyena
Hunter Syndrome 27 Sep 2009 An Aching Heart Although I have had many many wonderful people with me on this journey through life with Hunter Syndrome, besides Ryan, I have only one friend who has been with me… mcfadyena
Hunter Syndrome 23 Aug 2009 We've funded a $50,000 research grant!! I've had a weekend full of MPS Society meetings: a tour of Dr. Lorne Clarke's medical lab at BC Children's hospital where he does research on MPS (bone and joint… mcfadyena
Hunter Syndrome 31 Jul 2009 The Story of Stuff Watch this: http://www.storyofstuff.com The above link is not about MPS II or Trey directly, but I figure that as long as I have hope that Trey will live a long and… mcfadyena
Hunter Syndrome 24 Jul 2009 Overwhelmed, exhausted, ecstatic I have been thinking about this post for years. And right now I am probably too overwhelmed and exhausted to do it justice. But I'm going to try anyways. Since… mcfadyena
Hunter Syndrome 10 Jul 2009 Simon Ibell: The making of a health-care crusader Our hero, Simon Ibell, is once again in the news. This time the article is about Simon and his life growing up with Hunter Syndrome. I've heard most of the… mcfadyena
Hunter Syndrome 09 Jul 2009 Traveling to UNC for IT trial testing & final 'Time for a Cure' tally I spoke with Dr. Muenzer today. Trey, Ryan and I will be traveling to UNC for developmental testing done by Dr. Muenzer's team on July 19. Testing will happen on July 21… mcfadyena
Hunter Syndrome 18 Jun 2009 Test of Metal & MPS II IT Trial A few monthes ago, Trey's speech and language pathologist's husband, Salim, approached us with the idea of doing a bike race and raising money for Trey. Blown away that he… mcfadyena
Hunter Syndrome 17 Jun 2009 The Disappearing Male As I mentioned in the news section, I watched a documentary on CBS NewsWorld called 'The Disappearing Male.' It is worth a watch. I mentioned the documentary to someone this… mcfadyena