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
Hunter Syndrome 29 Oct 2011 Emergency removal of Trey's IT port Last night, Trey had emergency surgery to remove his new intrathecal port that was infected. Due to overwhelming support and love and requests for updates, here is the low down… mcfadyena
Hunter Syndrome 18 Oct 2011 Trey's first IT dose- a MONUMENTAL day Trey’s first dose as part of the MPS II Intrathecal trial was successful. We were the second case of the day and Trey was brought back at 8:45am. Dr. Muenzer… mcfadyena
Hunter Syndrome 17 Oct 2011 Trey's first intrathecal dose is tomorrow Ryan is with Trey right now, getting his fine and gross motor skills assessed. I am sitting in the waiting room. It is our third appointment of the day. First,… mcfadyena
Hunter Syndrome 07 Oct 2011 Intrathecal port-a-cath implantation complete! What an emotional roller coaster we’ve been on. I find it hard to blog because I don’t even know what to blog about. I could blog about having the time… mcfadyena
Hunter Syndrome 12 Sep 2011 Off to UNC for October Well, we have dates. I'm still blown away by the fact that Trey qualified for the IT trial. We knew about the possibility of this trial upon Trey's diagnosis and… mcfadyena
Hunter Syndrome 04 Sep 2011 On the cover of the North Shore News Click the link to read the story! http://www.nsnews.com/Drug+trial+gives+hope+North+Vancouver+family/5352293/story.html mcfadyena
Hunter Syndrome 27 Aug 2011 Public Service Announcement by Jeffrey Bowyer-Chapman & Elyse Levesque We have been wowed and amazed by the overwhelming support for our Gala and cause from the Vancouver and larger film industry. Please check out the video below to view… mcfadyena
