Hunter Syndrome

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…

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…

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…

I wrote this blog in January, after Trey and Ryan returned from Trey's third  intrathecal dose of enzyme. I wasn't sure about posting it, but now I am. In the past…

Trey received his 5th intrathecal dose of 30mg of Elaprase Tuesday, March 6 by lumbar puncture. His white count was again less than one, which means no reactions. Yahoo! By…

Family and friends have asked me 'how it's going' in the trial. Melissa Hogan, who I've now often referred to in my blog, has just put it perfectly, below. It…

Well, #4 is complete. Love it. There have been annoying hiccups in the journey, such as being detained by US security at the airport for hours before someone coming in…

Most people who know Trey and know about the trial, want to know what changes I've seen in Trey. He's now had three doses of intrathecal Elarpase. He gets his…

The below poem came to mind when a mum got in touch with me, thanking me for joining in her battle to fight for her 3 year old son to…

Good news! GREAT news actually. Trey's C1 or his top vertebrae is ossifying (turning into bone). In people with MPS, the top vertebrae doesn't form completely. It is what leads…