Hunter Syndrome 08 Dec 2010 PS Heartbreak A fellow camera operator friend posted the paragraph below in response to one of my blogs. I think it deserves its own blog. Thank you to Chris and Jake, and… mcfadyena
Hunter Syndrome 05 Dec 2010 MPS II Research Grant – Request for Applications The Canadian MPS Society is requesting applications for its $50,000.00 2011-2 Research Grant for research into MPS II (Hunter syndrome). This grant will be funded through the Society's MPS II… mcfadyena
Hunter Syndrome 24 Nov 2010 Here we go again… UNC We're off for another trip to UNC to have Trey's development tested as part of the screening study for the MPS II intrathecal trial. Our test dates are January 11… mcfadyena
Hunter Syndrome 03 Nov 2010 Shanti, Shanti, Shanti It's Sanskrit and it means 'Peace, peace, peace.' For four and a half years, while I was wondering and waiting to find out whether Trey would take one path, lose… mcfadyena
Hunter Syndrome 24 Aug 2010 Despair To give you an idea of where this is coming from, Dr. Muenzer told me that if this IT drug had already been proven safe and effective, he would treat… mcfadyena
Hunter Syndrome 19 Aug 2010 No real answers Well, we got Trey's results. Although his score jumped 8 points from April's tests, when Trey was sick, he did drop 3 points from his tests last July. So, he… mcfadyena
Hunter Syndrome 19 Aug 2010 No news yet, just emotions A friend sent me this, and especially given the news we are expecting today, it means even more: 'I loved you the minute I knew I was pregnant. I loved… mcfadyena
Hunter Syndrome 28 Jul 2010 UNC trip coming up For those of you who do check in here periodically to see how we're doing and what's going on, Ryan, Trey and I are leaving on Saturday, August 14 for… mcfadyena
Hunter Syndrome 14 Jun 2010 Cardiology Check-up After a long and exhausting and draining (and sick, for me) day, we found out that Trey's EKG and echocardiogram from today are indistinguishable (doctors words) from March 2009's tests.… mcfadyena
Hunter Syndrome 22 May 2010 We did it!!!!! $40,000 We raised $40,000 with our "Tacos for Trey" fundraiser. The specific number is $38,904.91. However, there is $700 that still needs to be collected from the event and we have… mcfadyena
