Tuesday, August 13, 2013

My Definition of "Cured"

Recently there was a news article about how Down Syndrome could be cured.

So they've discovered they can "silence" the extra X chromosome in people with Down Syndrome.  It doesn't sound like they've actually done it yet.  But I'm very interested in reading an update to this story when they do, and seeing how, exactly, people with Down Syndrome change with the unnecessary X silenced.

And if they can do that, it's not a far stretch at all to think that they can "silence" the extra branch of DNA that hangs off the X chromosome that causes Fragile X Syndrome.

It's interesting how the word "cure" gets thrown around, when none of us really can know what a cure would look like for our kids' various disabilities.  The mom in this story mentions her hesitation at accepting a cure.  How would it change her child?  On her blog, The Sassy Southern Gal, is a great discussion about cures and disabilities and society's views about different types of disabilities.  You should read it.

I guess I'm not worried about how Zack and AJ would change, if they were able to silence the DNA that causes Fragile X.  I expect their humor would stay the same.  Zack would continue to be the trailblazer.  Unless its an unpleasant thing I'm trying to get them to do, in which case Zack would insist that AJ go first.  AJ would continue to be the sensitive one.  Only maybe, not quite as debilitatingly sensitive.

I don't think that that piece of DNA that causes their Fragile X makes them who they are; I think it limits who they could be.

But how would you define "cured?"  There are so many symptoms involved with a disorder like Fragile X Syndrome, and so many variances in severity.  Cognitive deficiency; anxiety; impulsivity; sensory sensitivity.  We all experience some of these symptoms.  Does "cure" mean removing all the symptoms, or just most of them?  Does "cure" maybe mean just reducing the symptoms so that the person afflicted can live a more "normal" life?  And then, what exactly is a "normal" life?  What makes any of us normal?

(Sorry for the overuse of quotes in this post, by the way.)

You know how I've decided to measure "normal?"  How I determine what "cured" would be?

Driving a car.

If a person can learn to drive a car - have the cognitive ability and coordination and awareness to learn to operate a vehicle, learn all the rules of the road, demonstrate sufficiently good instincts - if a person could pass a driver's test - I'd call him "cured."

If he can drive a car, I'm going to call that "cured," because driving takes a certain amount of cognitive ability, without requiring a great big IQ.  It doesn't require brilliance or maturity or street smarts or even logic.  Think of everyone you know who has managed to get a driver's license.  They aren't all rocket scientists, are they?  They're just, for lack of a better term... fairly normal.

Driving.  It's my gauge for cured.  How does that sound?  Who's with me?


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