Hunter Syndrome 19 Jan 2007 Sniff, sniff… Ryan’s cousin (she has 3 kids of her own) sent this to me this morning. She saw it on a forum she participates in and I want to share it… mcfadyena
Hunter Syndrome 17 Jan 2007 A Good Good Day We found out today. Special Access has been approved!!!!!! I am so glad it only took 2 days. I’ll start from the beginning. This morning we saw Trey’s ENT, Dr.… mcfadyena
Hunter Syndrome 16 Jan 2007 Still No ERT Start Date Just frustrated waiting over here in Vancouver. Bill Mercer, the man who is helping us get Trey’s ERT from the Pharmaceutical Services Division of the Ministry of Health, is being… mcfadyena
Hunter Syndrome 07 Jan 2007 "Everyone's on Holidays" This is what we keep hearing...We heard it in the summer when the FDA first approved Elaprase and we started trying to get it for Trey, and we’re hearing it… mcfadyena
Hunter Syndrome 30 Dec 2006 Donating Blood Hello. We have no new news on Trey’s front, but I am writing to invite you all to donate blood or sign up to become a part of the Bone… mcfadyena
Hunter Syndrome 22 Dec 2006 Dr. Charlie Peters This morning I spoke with Dr. Charlie Peters, from Mercy Hospital in Kansas City. He worked for a long time with Dr. Krivit (a well known and well respected and… mcfadyena
Hunter Syndrome 19 Dec 2006 A Decision is Made So we’ve made a decision. ERT. And there’s a whole lot of emotions which go along with that decision. It is possible that one day Ryan and I may have… mcfadyena
Hunter Syndrome 15 Dec 2006 My floating Head… Well, we’re back from our appointment with Dr. Schultz and we have still made no decisions. This is not a bad thing, we actually kind of expected it. I just… mcfadyena
Hunter Syndrome 07 Dec 2006 Conversation with Dr. Kurtzberg I spoke with Doctors Kurtzberg and Szabolcs this morning from Duke. Where to start...if Avery is not a 6 of 6 match, she thinks that there will not/should not (I’m… mcfadyena
Hunter Syndrome 06 Dec 2006 MPS Society Fundraising Letter This is the letter that Kirsten Harkins and I wrote for the Canadian MPS Society's Annual mailer. Click here to read the letter. mcfadyena
