Hunter Syndrome

Makes me think of Trey. This one's for you, Jen. Deb

Ever since Trey was diagnosed, Ry's been talking about making a documentary about our experience. More recently, he started talking about making a movie. Well, it's been made. "Extraordinary Measures",…

The head nurse at the medical day unit at the hospital has been commenting on wanting to chart Trey's height and weight on a graph for a few weeks now…

Some of you may know we're home schooling. Because home schooling is not about Hunter Syndrome (all of our kids are/will be home schooled), I've left those details off our…

I wanted to add an addendum to last nights post about my current hopes and dreams. Because, although upon diagnosis my hopes and dreams for Trey were squashed, they're back.…

I've been inspired by Jen. Her son was relatively recently diagnosed with Hunter's. And in hers words, it's not getting easier. Everyone told her it would get easier, and it's…

Hello again, During Trey's infusion today, Trey's PT (physio) came to see us with Dr. Stockler. Dr. Stockler has been very interested in this part of Trey's care because of…

We had an early and long morning yesterday, with a number of different appointments. After a few years of experience, we have started booking our yearly orthopedics check up as…

Although I have had many many wonderful people with me on this journey through life with Hunter Syndrome, besides Ryan, I have only one friend who has been with me…

I've had a weekend full of MPS Society meetings: a tour of Dr. Lorne Clarke's medical lab at BC Children's hospital where he does research on MPS (bone and joint…