Hunter Syndrome

There are so many "Day's." Anti-bullying Awareness Day, World Thinking Day, Earth Day, World Cancer Day... google it and you'll find days you didn't even know existed! Rare Disease Day…

Short but sweet. Y'all might love this given my usual essay style blogs. ;-) Trey was diagnosed 11-years ago today. I was scared of moms like me when Trey was…

In the past few months I’ve started a number of blogs that got interrupted by life, so I’ll give you a shortened version here, followed by information about our yearly…

The Hunter Syndrome Research Coalition (the result of our MPS II family banding all our organizations together to fund research) recently donated $200,000 to support the next phase of Dr. McCarty and…

Gosh, I don't blog a lot these days. There's a lot of reasons for that: 1. Trey is doing well, so my need to write with updates or for cathartic reasons…

I cannot tell you how many blog posts I have begun over the past 4 years and not published (well I can because I saved them, over 20). Everything I…

I grew up watching My So Called Life with my sister, completely in love with Angela Chase (Claire Danes) and Jordan Catalano (Jared Leto). My sister wouldn't let a word…

Project Alive began from one photo. One teacher. A kindergarten teacher in Spring Hill, Tennessee, sent home photos with her children at the end of the school year. But little…

Just writing this title, my heart catches in my throat. It's a loaded statement, which is an understatement. Loaded because we were told from one doctor Trey would die by…

I read this quote and it's fitting: "Adversity is like a strong wind. It tears away from us all but the things that cannot be torn, so that we see…