Hunter Syndrome 12 Dec 2012 The Journey of Hope This morning Trey received his fifteenth dose of intrathecal enzyme at UNC. This evening I watched a video made by the National (US) MPS Society called 'The Journey of Hope' that… mcfadyena
Hunter Syndrome 20 Nov 2012 Cardiology, ENT, EMG, Oh My! Today was a packed with appointments for Trey. I LOVE it. Usually we travel the 45-60 minute distance across town to see various departments individually- not far compared to some… mcfadyena
Hunter Syndrome 11 Nov 2012 Yoga Camp I went to a yoga retreat last week (we’ve dubbed it ‘yoga camp’- it was the first module of yoga teacher training). I was really excited and at first told… mcfadyena
Hunter Syndrome 25 Oct 2012 A Badge of Honour My dear friend Tovah, a dedicated supporter of our MPS II Fund and good friend, shared this letter with me today during hockey practice (not ours, our 7 YO's ;-)).… mcfadyena
Hunter Syndrome 19 Oct 2012 Let's Find the Beauty in Difference. Let's Find the Beauty in All of Us. Ever since Trey was diagnosed, I've had issue with the word disease. I don't like it. It makes MPS II scary. It makes MPS II contagious. It makes MPS II… mcfadyena
Hunter Syndrome 21 Aug 2012 One Year Ago One year ago, our entire lives changed (again). August 19, 2011 will forever be etched in my mind as the most intense and anxious day of my life. Hands down.… mcfadyena
Hunter Syndrome 10 Aug 2012 Project One Million [youtube] It was our first MPS conference in July 2006. Trey was diagnosed in February 2006. Enzyme Replacement Therapy (ERT) for MPS II, Elaprase, was about to be approved by… mcfadyena
Hunter Syndrome 24 Jul 2012 Boys with Bigger Hearts Joey Howell followed us on our trip to UNC this month, to film Trey's tenth intrathecal dose of Elaprase, for his documentary Boys with Bigger Hearts. Joey has a family… mcfadyena
Hunter Syndrome 26 Jun 2012 Less Eventful, but No Less Amazing or Humbling Trey got his ninth dose of intrathecal Elaprase today. No one got sick, no flights were missed, there are no ports to be broken or leak, lumbar puncture and anesthesia… mcfadyena
Hunter Syndrome 09 Jun 2012 The Highs (after the lows) Trey did get his dose a week and a half ago. The boy is lucky. For the past three monthes, Trey got the bugs his sister, brother and dad passed… mcfadyena