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The 2023 BDSRA Annual Conference

This month was the 2023 BDSRA Annual Family Conference, in the great state of Texas. Specifically, it was in Denton, TX — which is actually about 45 minutes from where we lived in Grapevine prior to moving to MA after Scarlett’s diagnosis. Since Scarlett isn’t great on flights, and Cody has never even been on…

WBZ News Appearance!

It has been a minute since I’ve last written. Honestly, I’ve written SO MANY blogs in my head, and just haven’t gotten them down on paper (so to speak). There have been things that I’ve wanted to share with everyone, but honestly, sometimes it takes so much mental energy to relive something, that I end…

Welcome to 2023!

Yes, I realize that it’s nearly March already (how crazy is that‽), but today is also Rare Disease Day, so it’s the perfect time for an update! Let’s quickly recap Scarlett’s 2022 for those that may have not been as close to us.

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