Hunter Syndrome 11 Jan 2010 Home schooling Some of you may know we're home schooling. Because home schooling is not about Hunter Syndrome (all of our kids are/will be home schooled), I've left those details off our… mcfadyena
Hunter Syndrome 07 Jan 2010 My hopes and dreams for Trey, now I wanted to add an addendum to last nights post about my current hopes and dreams. Because, although upon diagnosis my hopes and dreams for Trey were squashed, they're back.… mcfadyena
Hunter Syndrome 06 Jan 2010 Finding Hope I've been inspired by Jen. Her son was relatively recently diagnosed with Hunter's. And in hers words, it's not getting easier. Everyone told her it would get easier, and it's… mcfadyena
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
