Hunter Syndrome 26 Jan 2012 Cardiology & opthalmology Good news! GREAT news actually. Trey's C1 or his top vertebrae is ossifying (turning into bone). In people with MPS, the top vertebrae doesn't form completely. It is what leads… mcfadyena
Hunter Syndrome 23 Jan 2012 Trey’s Bilateral Carpal Tunnel Release The procedure was 4 hour and 15 minutes. Trey’s surgeon, Dr. Verchere, booked him for 3 hours, thinking it would be plenty time. There was a lot of scar tissue… mcfadyena
Hunter Syndrome 16 Jan 2012 An unexpected call I got a call today. It was a long distance call and I thought it was a telemarketer. I was about to tell this woman I was busy, when she… mcfadyena
Hunter Syndrome 15 Jan 2012 Expensive drugs for rare diseases : an anthropological analysis of the cultural, political, and economic dimensions of metabolic disease For anyone affected by a rare disease worldwide, and for all of us working towards an Orphan Drug Policy in Canada, the below thesis is an excellent source of information… mcfadyena
Hunter Syndrome 10 Jan 2012 Never Gets Old Just before his third birthday, after six monthes of fighting with the BC government, Trey became the first person in Canada to be approved for Elaprase, a life-saving IV Enzyme… mcfadyena
