Hunter Syndrome

Ever since Trey was diagnosed, I've had issue with the word disease. I don't like it. It makes MPS II scary. It makes MPS II contagious. It makes MPS II…

One year ago, our entire lives changed (again). August 19, 2011 will forever be etched in my mind as the most intense and anxious day of my life. Hands down.…

[youtube] It was our first MPS conference in July 2006. Trey was diagnosed in February 2006. Enzyme Replacement Therapy (ERT) for MPS II, Elaprase, was about to be approved by…

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…

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…

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…

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…

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…

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…

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…