Hunter Syndrome 24 Jul 2012 Boys with Bigger Hearts Joey Howell followed us on our trip to UNC this month, to film Trey's tenth intrathecal dose of Elaprase, for his documentary Boys with Bigger Hearts. Joey has a family… mcfadyena
Hunter Syndrome 26 Jun 2012 Less Eventful, but No Less Amazing or Humbling Trey got his ninth dose of intrathecal Elaprase today. No one got sick, no flights were missed, there are no ports to be broken or leak, lumbar puncture and anesthesia… mcfadyena
Hunter Syndrome 09 Jun 2012 The Highs (after the lows) Trey did get his dose a week and a half ago. The boy is lucky. For the past three monthes, Trey got the bugs his sister, brother and dad passed… mcfadyena
Hunter Syndrome 27 May 2012 Fragile Sometimes I feel normal. I pick weeds from our garden peacefully or sit and flip through recipe books with curiosity or chat with a parent at a birthday party about… mcfadyena
Hunter Syndrome 11 May 2012 The First Year I've tried writing a number of different blogs to speak to the video that I share below. I was able to watch it and read people's posts and blogs about… mcfadyena
Hunter Syndrome 24 Apr 2012 The Cupcake Girls episode May 2! While organizing our unforgettable Once Upon a Cure Gala last September 24, 2011, we connected with The Cupcake Girls. While our partnership wasn't part of the original plans, I cannot… mcfadyena
Hunter Syndrome 05 Apr 2012 Calmer: Medical Events with Cognitively Impaired Children My good friend, Melissa Hogan, has published a new book. Although it is titled 'Medical Events with Cognitively Impaired Children', as she comments herself in the book, I think her… mcfadyena
Hunter Syndrome 03 Apr 2012 My kid is a Super Star I know we all think that about our kids, at least some of the time. It’s what makes us good parents and what helps us put up with all the… mcfadyena
Hunter Syndrome 23 Mar 2012 The Dant Family If you're looking for a little inspiration in your day. If you're doubting that one person can make a difference. It doesn't get much better than this. We can and… mcfadyena
Hunter Syndrome 16 Mar 2012 Mother Bear I seem to have developed multiple personality disorder. I have always had different roles: mother, sister, daughter, friend, neighbor etc., but now I think I’m developing two separate personalities. I'm… mcfadyena
