Wow, that's a tough one.
We learned about a friend of ours with a similar diagnosis a few months ago. It was a real perspective changer. It really made the small stuff seem, well, small.
I wish we could hang on to those moments of newfound appreciation. Regrettably, we follow a sine wave that goes up... and down. But, as we know, it gets better. 
Cool email from your nephew.
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