Hunter Syndrome

This song is for Trey, for Jamie, Melissa, Andy and Ellen, for MPS parents, and for all parents who would do anything for their kids. [youtube] Our battle with Johnson…

On Wednesday, February 20, Johnson & Johnson (or more specifically, Janssen Pharmaceuticals, who is a company of Johnson & Johnson) told Andrew McFadyen of The Isaac Foundation that they would…

This is a picture of Ryan, Trey, and I moments after Trey’s birth. If you are a parent, you can probably remember and feel that moment, what it was like…

It is quite strange to see the last few years of your life boiled down to a few paragraphs of text and a line on a chart. It is even…

Trey was diagnosed seven years ago tomorrow, Valentine's Day. His 9th birthday is only two weeks later, on March 1 (he'll be at UNC on his birthday). These anniversaries, and…

This time of year always brings forth emotion. Mine has been brewing for a bit, but with only two sleeps away from Santa, it's now here. Our kids are SO…

This morning Trey received his fifteenth dose of intrathecal enzyme at UNC. This evening I watched a video made by the National (US) MPS Society called 'The Journey of Hope' that…

Today was a packed with appointments for Trey. I LOVE it. Usually we travel the 45-60 minute distance across town to see various departments individually- not far compared to some…

I went to a yoga retreat last week (we’ve dubbed it ‘yoga camp’- it was the first module of yoga teacher training). I was really excited and at first told…

My dear friend Tovah, a dedicated supporter of our MPS II Fund and good friend, shared this letter with me today during hockey practice (not ours, our 7 YO's ;-)).…