Charley is 9 and three quarters years old. When I was a kid looking forward to turning 10, all I could think about was "double…

Sometimes for a few blissful minutes, I forget that Charley has DMD. To you that might seem impossible, since we're constantly faced with daily reminders…

I am elated to finally be installed in our new house for so many reasons. First of all, I can now get back to my…

This may not sound right but I have to say it anyway -- thank god the kids are back in school!!!!! Summer was full and…

We've definitely entered a new phase in terms of Charley's awareness of his disease. We are transitioning out of the "honeymoon phase," when the limitations…

When I look back to review previous blogs, I realize how huge the chasm is between what goes on in our lives and what gets…

We are just back from a weekend in New York City, where hundreds of shoppers streamed into my sister Kathe’s apartment to buy lingerie, fur…