Hunter Syndrome 09 Jul 2009 Traveling to UNC for IT trial testing & final 'Time for a Cure' tally I spoke with Dr. Muenzer today. Trey, Ryan and I will be traveling to UNC for developmental testing done by Dr. Muenzer's team on July 19. Testing will happen on July 21… mcfadyena
Hunter Syndrome 18 Jun 2009 Test of Metal & MPS II IT Trial A few monthes ago, Trey's speech and language pathologist's husband, Salim, approached us with the idea of doing a bike race and raising money for Trey. Blown away that he… mcfadyena
Hunter Syndrome 17 Jun 2009 The Disappearing Male As I mentioned in the news section, I watched a documentary on CBS NewsWorld called 'The Disappearing Male.' It is worth a watch. I mentioned the documentary to someone this… mcfadyena
Hunter Syndrome 17 Jun 2009 The tubing used in Trey's infusions Yesterday was an 'I'm a good mom' day. After hearing about a documentary called 'The Disappearing Male', the link for which is in the next blog, I got on the… mcfadyena
Hunter Syndrome 17 Jun 2009 League MVP for Baseball We received some more excellent news yesterday. A few monthes ago, when Trey's coach and Vancouver Minor Baseball found out about Trey's difference and our 'Time for a Cure' fundraiser,… mcfadyena
Hunter Syndrome 29 May 2009 Trey had an opthamology appointment today… Trey had an opthamology appointment today. He REALLY didn't want to go. I had to drag him out the door and into the van. However, our wonderful afternoon began with… mcfadyena
Hunter Syndrome 27 May 2009 $9,000 raised with 'Time for a Cure' We've done tallies to date for the amount of money raised with 'Time for a Cure.' $9,000. Thank you so much to everyone who participated. I do expect a bit… mcfadyena
Hunter Syndrome 16 May 2009 We've done a draw for our 'Time for a Cure' winners!! This morning Trey, Avery, Sadie, my mom and I drew winners for our 'Time for a Cure' participants (www.timeforacure.ca). Read below to find out who won what: Trip to Frog's… mcfadyena
Hunter Syndrome 15 May 2009 Today is International MPS Awareness Day Today is International MPS Awareness Day. What does that mean and what can you do? Talk about MPS with anyone who will listen!! The first step in this battle with… mcfadyena
Hunter Syndrome 11 May 2009 Rare Disease Article in BC Parent Magazine An article I wrote about the situation with rare diseases in Canada is in the most recent edition of BC Parent Magazine. Click here to read the article. mcfadyena
