Hunter Syndrome 21 Nov 2008 I had an appointment with Dr. Stockler today, so have many updates! I had an appointment with Dr. Stockler today, so have many updates! Since diagnosis, Trey has had 3 cardiology appointments (echo and EKG’s). The first results were normal. In January… mcfadyena
Hunter Syndrome 04 Nov 2008 A local parenting and family magazine, West Coast Families, featured an article about Trey. A local parenting and family magazine, West Coast Families, featured an article about Trey. Click on the thumbnail, left, to read the story. We received a bit of information about… mcfadyena
Hunter Syndrome 28 Oct 2008 Trey had his follow up hearing test yesterday. Trey had his follow up hearing test yesterday. The really exciting news for me is how well Trey did in the hearing booth. My mom was with him and said… mcfadyena
Hunter Syndrome 28 Oct 2008 Felt the Urge I usually get the urge to write after I receive news about Trey. This time the news was that Trey has carpal tunnel syndrome (CTS). After hearing Dr. Muenzer speak… mcfadyena
Hunter Syndrome 21 Oct 2008 In the past month and a half, Trey has had a number of tests, none of which I was really expecting. In the past month and a half, Trey has had a number of tests, none of which I was really expecting. May is usually our busy testing month. However, starting… mcfadyena
Hunter Syndrome 29 Aug 2008 The Ontario government has approved Elaprase for boys and men affected by the non-neurological form Hunter Syndrome! The Ontario government has approved Elaprase for boys and men affected by the non-neurological form Hunter Syndrome! Treating Hunter Syndrome in boys with CNS involvement is controversial and it is… mcfadyena
Hunter Syndrome 23 Aug 2008 Tacos for Trey tallies are in! Since April 1st, the MPS II Fund has received more than $57,000 - over $32,000 was raised through Tacos for Trey and another $25,000 through an anonymous donation. A very… mcfadyena
Hunter Syndrome 20 Aug 2008 Live interview on Canada AM with Simon Ibell. Live interview on Canada AM with Simon Ibell. Click here to watch it. mcfadyena
Hunter Syndrome 17 Aug 2008 In the past weeks, our good friend Simon Ibell has been busy! In the past weeks, our good friend Simon Ibell has been busy! Not only did he start a petition to pressure the Ontario government to fund Elaprase (the Enzyme Replacement… mcfadyena
Hunter Syndrome 29 Jul 2008 I have a few exciting updates! First off, Trey’s dose of Elaprase was increased on July 21 from 2 to 3 vials. I have a few exciting updates! First off, Trey’s dose of Elaprase was increased on July 21 from 2 to 3 vials. This is VERY exciting given what I learned… mcfadyena