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Apr 17, 2021
12:23:25am
durandal Rampant AI
I absolutely loved the new video from Mark Rober that's been posted a couple times here. I've talked about it some on
here, but my daughter (6yo) has developmental disabilities caused by a rare gene disorder. Basically, her gene that codes for the potassium ion channels in the membranes of your neural cells (which channels are how you can send neural signals from your brain to the rest of the body) has a single base pair change that's different from most people, which causes the protein to not function properly. The result is that my daughter has many developmental disabilities. She has microcephaly because her brain matter didn't fully develop. She can't (and probably won't) ever walk, crawl, or verbally communicate with us. She has reduced mental capabilities, has a hard time visually focusing on objects (probably has cortical visual impairment, though it's hard to tell), and often has erratic movements of her arms and legs because she lacks muscle control. She also makes noises that are normal to us because we are used to her but seem strange to others: grunts, squeals, coos. Sometimes these noises can be VERY LOUD (like in a silent Sacrament Meeting).

The reason I loved Mark's video is because despite all the things my daughter is unable to do, she has a gift beyond most people. She lights up every room she is in. She has the ability to make people, even strangers, smile. She is almost always happy and very often has a smile on her face. Her laugh (which also can be VERY LOUD) is infectious. It's pretty much impossible to not laugh with her when she's squealing because she's being tickled or swinging in a swing. She is an excellent snuggler. She has a positive impact on EVERYONE she meets. How many people can say that?

Check out Mark's video if you haven't watched it yet. He summarizes so well how I feel about my daughter.
https://www.youtube.com/watch?v=ybPgmjTRvMo
This message has been modified
Originally posted on Apr 17, 2021 at 12:23:25am
Recategorized from Marriage and Relationships to Chit Chat by durandal on Apr 17, 2021 at 8:20:37am
durandal
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science pete
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durandal
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