Waiting for the other shoe to drop

I feel like that’s all we’re really doing. Every day we read about another girl with Rett who’s seizures are out of control, who had to get a feeding tube, who at 25 is still no further along in their progress than Maggie, or for whom the worst has happened. With Maggie, I’ve convinced myself that forward progress, however small, will ultimately allow her to lead a full life. I’ve even convinced myself that she can lead an independent life if we can get her to progress enough. Somewhere deep down, I know, without a cure, I’m fooling myself on that, but, it keeps me going in any case.

And a cure is possible. It is. I’ve talked to some of the leading minds on the subject and they’re all optimistic. According to our friend Dan, I’m “AJing” Rett syndrome. That could mean I’m making Rett syndrome feel uncomfortable which is what “Ajing” typically means. Or it could mean I’m putting 1000% effort into it. Because of the latter, somehow I’ve been talking to the people who are running these foundations. They’re just moms and dads like us. They’re just trying to find answers like us. They all think there can be a cure. But money for trials and time is all they need. One of the problems with Rett is it leaves us with this constant sense of urgency because of all of the symptoms that are yet to hit. So I can donate money, but we don’t have a ton of time. She can live an independent life. She can live a full life. But not without our help.

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