Hunter Syndrome 05 Feb 2008 One Year of ERT! Today Trey has been on ERT for one year. We had a small party at the MDU yesterday for his 53rd infusion with cake, presents and many many thanks to… mcfadyena
Hunter Syndrome 05 Feb 2008 A Fantastic Year Trey began ERT one year ago today. What a fantastic year it has been. He has not missed one infusion, which is unbelievable. He is growing like a weed and… mcfadyena
Hunter Syndrome 04 Jan 2008 Disappointing CDR News In disappointing, but expected news, the CDR (aka. Common Drug Review) did NOT recommend Elaprase for funding. As defined by the Canadian Agency for Drugs and Technologies in Health, on… mcfadyena
Hunter Syndrome 21 Dec 2007 What I'm Talking About In my last entry I spoke about being attracted to people who are real. Well, here’s an example. This excerpt is taken from a friend of mine’s Caringbridge website. Her… mcfadyena
Hunter Syndrome 21 Dec 2007 The Connection, Winter Issue I copied the below out of the Winter issue of the Canadian MPS Society’s newsletter, The Connection: Support Patients with Rare Disorders in their Fight for Life-Saving Therapy “Canada is… mcfadyena
Hunter Syndrome 18 Dec 2007 Life Experiences In the past weeks, we have had a bit of a rough go with adjusting to life with Sadie. Ry went back to working long film hours, often at night,… mcfadyena
Hunter Syndrome 18 Dec 2007 All sorts of medical updates… Happy Holidays! It’s been a while since I’ve updated. Here’s what’s new: another boy started ERT for Hunter Syndrome last Wednesday at BC Children’s Hospital. I consider this big news… mcfadyena
Hunter Syndrome 08 Nov 2007 A Sister for Trey & Avery & UNC On Tuesday, October 30, Trey and Avery’s baby sister, Sadie, was born in the water at home into the arms of her dad. I began having contractions at 4:30am, but… mcfadyena
Hunter Syndrome 02 Oct 2007 Tube surgery, PT, private Elaprase funding Trey had a successful tube surgery yesterday morning. Both of his previous tubes were out, so Dr. Moxham replaced them with permanent T-tubes. His left ear had some thin fluid… mcfadyena
Hunter Syndrome 01 Oct 2007 Tube Surgery #3 Tube surgery #3, General Anesthetic #7. I’ve never had one. This is what I was thinking as my kid was crying in my arms when I was in the recovery… mcfadyena
