Hunter Syndrome 13 Jan 2011 IQ qualified Trey's IQ qualified him to move into further qualifying assessments for the IT trial, that puts a concentrated form of the enzyme his body is missing, directly into the brain.… mcfadyena
Hunter Syndrome 11 Jan 2011 Sleep? Not in North Carolina. No matter now hard I try to relax, and no matter how calm I am or think I am going into one of these trips, when I am here, I… mcfadyena
Hunter Syndrome 10 Jan 2011 Distraction My family and friends who are close enough to know the day to day goings on in my life often hassle me for taking on too much. Today made me… mcfadyena
Hunter Syndrome 16 Dec 2010 A flight with Santa Yesterday was an AMAZING day. Since Trey was diagnosed, we've participated in many events for the BC Children's Hospital Foundation: Miracle Weekends, radio and television interviews, the Festival of Lights,… mcfadyena
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