The first thing I suppose I should mention is that there is no actual treatment for the kids to be had here. This wasn't a medical evaluation or a "check-up." This was pure science. We're not going to receive a prescription or a magic pill to make their FXS go away (wouldn't that be awesome?).
What this does enable, though, is more research, data collection, and analysis so that future treatments can be made possible. While we may not benefit immediately or even in the near term, this aids in the effort for long-term results and conclusions. And who knows? Maybe our kids are the trigger or that last piece of the puzzle to help make that pill that makes FXS go away. :)
The experience was similar to the kids' evaluations at MISD for their early-intervention programs -- lots of questions and evaluations to determine a baseline for their development and abilities. That was rather emotionally draining, because it shined that spotlight again on where the kids are versus where kids who don't have developmental or cognitive disabilities are at their respective ages. But, they needed to know where the kids are in order to gather data and conduct observations, so we had to just buckle down and do it.
What was interesting was that their research apparently has a shortage of girls in their studies that fall within the age brackets that they need, and Evie was the perfect subject. Near the end of the year or next year, they want to do a follow-up with her, and we're not sure yet whether that means they're coming back up to Michigan or whether they're going to fly us down to South Carolina (depends on their grant funding).
Nonetheless, it's both exciting and scary. It's exciting that we get to help with Fragile X research in the hopes that future children and families can benefit. It's scary too because it also means that it's all the more real. Then again, I suppose one wouldn't know it to just look at these guys:
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