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
Hunter Syndrome 22 Dec 2011 Carpal Tunnel Release booked & Osteopath appointment After spending a lot of time speaking with Trey's plastic surgeon, Dr. Verchere, and a hand surgeon at the University of Minnesota, Dr. Van Heest, who is an expert in… mcfadyena
Hunter Syndrome 19 Dec 2011 An update in honour of my grandma My eighty-six year old grandma, Omi, got her first ever computer and a wireless internet connection about a month ago, so she coud read Trey's blog (she lives a five… mcfadyena
Hunter Syndrome 14 Dec 2011 Online Auction to Benefit MPS II Research Our second online auction is up! It will be live from Dec. 14-23 and will benefit the MPS II Research Fund (to read more about the fund and how it… mcfadyena
Hunter Syndrome 13 Dec 2011 2nd IT Elaprase dose complete Trey's second IT Elaprase dose, of 30mg, is complete. He received it this afternoon via lumbar puncture under general anesthetic. Long story as short as possible, a doctor accesses Trey's… mcfadyena
Hunter Syndrome 28 Nov 2011 Shire BRAVE Awards Recipients Announced Shire honors 14 caregivers through inaugural international recognition program DUBLIN, Nov. 18, 2011 /PRNewswire/ -- Fourteen caregivers from around the world have been announced today as Recipients or Distinguished Honorees in the… mcfadyena
Hunter Syndrome 23 Nov 2011 $100,000 MPS II Research Fund RFA Issued This past year we have raised enough money, for the first time ever, to issue a $100,000 MPS II research grant. The application deadline is February 29, 2012 and the… mcfadyena
Hunter Syndrome 18 Nov 2011 December IT trip as planned Above is a picture of Avery reading to Trey and holding his hand while I was flushing and de-accessing Trey after his infusion today. Avery is growing up to be… mcfadyena
Hunter Syndrome 10 Nov 2011 Trey's November trip to UNC for IT dosing has been cancelled This is Trey moments after he lost his front tooth. :-) Two weeks ago tomorrow, Trey had emergency surgery to remove his infected intrathecal port. Yesterday the neurosurgeon who removed… mcfadyena
Hunter Syndrome 07 Nov 2011 Normal isn’t necessary I will begin by saying: the below blog is NOT mine. My friend Melissa wrote it, but it echoes my thoughts and sentiments and it is so well written, I… mcfadyena
