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
Hunter Syndrome 26 Aug 2011 NORTH VANCOUVER BOY FIRST IN CANADA TO RECEIVE BREAKTHROUGH DRUG News Release NORTH VANCOUVER BOY FIRST IN CANADA TO RECEIVE BREAKTHROUGH DRUG Vancouver, BC – On August 19th Deb Purcell’s Facebook status read “And now I wait. The longest four… mcfadyena
Hunter Syndrome 20 Aug 2011 Qualified for the IT trial (and randomized to drug) Reading the title is still mind boggling for me. For the past year, I have been researching hydrocephalus in MPS, researching symptoms, interviewing mums whose kids developed hydrocephalus as to… mcfadyena
Hunter Syndrome 13 Jul 2011 New UNC and LP date In summary: when the IT trial first opened in the summer of 2009, we went to UNC to find out if Trey's IQ would qualify him for the trial. It… mcfadyena
