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
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