mcfadyena

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 ;-)).…

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…