Author: Jason Hubsch
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Here we go again…
Tribe members that have been with us for several years now may recall that, in February of 2022, Scarlett contracted bacterial meningitis from an infusion, in which she was in the hospital for nine days. You see, Scarlett gets infusions of Brineura at Boston Children’s Hospital (BCH) every other week, in an all-day-long process in…
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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…
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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.