Hunter Syndrome 19 Sep 2007 Thanks Stargate!! First, I will get the bad news out of the way. Ontario still will not fund Elaprase for Andrew Lanese, a boy with MPS II whose family has been fighting… mcfadyena
Hunter Syndrome 06 Sep 2007 Yeah, Frustrated Where to start. I think a lot of it is due to the fact that I have very little energy being 32 weeks pregnant and all, but I think I’m… mcfadyena
Hunter Syndrome 21 Aug 2007 Our Trooper I am blown away by the difference in Trey from his last hernia surgery to this one. Three monthes ago, when he had surgery for his umbilical and left inguinal… mcfadyena
Hunter Syndrome 07 Aug 2007 A Whole Bunch of Stuff We spent the last part of June, all of July, and the first part of August at my mom’s and grandma’s cabins at Cultus and Okanagan Lake, which is why… mcfadyena
Hunter Syndrome 11 Jul 2007 Conversation with Dr. Stockler As I mentioned in the News section, Dr. Stockler came to visit us at the MDU during Trey’s infusion on Monday. We discussed Trey’s recent series of tests as well… mcfadyena
Hunter Syndrome 07 Jul 2007 MPS Society Press Release for Elaprase MPS Society Welcomes New Enzyme Replacement Therapy for Rare Genetic Disease – MPS II (Hunter syndrome) Elaprase ™ offers hope for children and adults with MPS II (Hunter syndrome) (Vancouver,… mcfadyena
Hunter Syndrome 21 Jun 2007 Elaprase approval, ultrasound, cardiology Elaprase has been approved by Health Canada!! This is a huge step because it means that Elaprase is now accessible to all people in Canada affected by Hunter Syndrome. It… mcfadyena
Hunter Syndrome 10 Jun 2007 The MPS Cup On a positive note, last night was the MPS Cup. It was so much fun. In the afternoon we attended the Fantasy hockey game where friends and family came to… mcfadyena
Hunter Syndrome 09 Jun 2007 A Sad Day Last night I received an email that my good friend, Amy Donaldson, had passed away that morning. She died after a hard battle with cancer. I was first introduced to… mcfadyena
Hunter Syndrome 05 Jun 2007 BCCHF Miracle Weekend, MPS Cup & I'm preggers! This past weekend, Trey, Ave, Ry and I participated in the BC Children’s Hospital Foundation Miracle Weekend. It was an amazing event with tons of stuff for the kids to… mcfadyena
