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Started By
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Friend's kid was diagnosed with atypical Rett's syndrome. Damn.
Posted on 2/5/18 at 5:33 pm
Posted on 2/5/18 at 5:33 pm
Reading about this thing now. What a bitch. Talk about a living hell on earth.
6
Posted on 2/5/18 at 5:39 pm to prplhze2000
This thread would be more interesting if we didn't have to Google what that was.
Posted on 2/5/18 at 5:47 pm to prplhze2000
We know a family whose two year old (now 8) was diagnosed with this. Really really hard times are in store for your friend’s family and it would be good for you to offer help whenever you can.
This post was edited on 2/5/18 at 5:48 pm
Posted on 2/6/18 at 12:21 am to prplhze2000
having a child that is chronically unhealthy is terrifying to me. To the point that I don't think I even want kids and the risk that comes with it.
Posted on 2/6/18 at 7:53 am to prplhze2000
As always, no child deserves this. Maybe the parents know about CBD and try it early. Best wishes to all.
Posted on 2/6/18 at 7:56 am to prplhze2000
NBC News just ran a story on Rett's Syndrome last week. Richard Engel, their chief foreign correspondent, has a son with the disorder.
LINK
LINK
quote:
Engel and his wife, Mary Forrest, knew early on that something wasn't right with their son, Henry. Even as the boy approached the second year of his life, he couldn’t talk or clap his hands. He also couldn't walk or even sit up straight. The boy’s parents took him to every doctor they could think of.
“It was a mystery and we thought, ‘Okay, well there are late bloomers,’” Engel remembered thinking.
Then the results of the full set of genetic tests came back last September, just around his second birthday, revealing Henry had a genetic brain disorder, a variation of Rett syndrome. The condition is caused by a rare genetic mutation that almost exclusively affects girls. It currently does not have a treatment or cure.
This post was edited on 2/6/18 at 7:57 am
Posted on 2/6/18 at 8:23 am to prplhze2000
I will say a prayer for this family, we don't often think of it, but having healthy children is beyond a blessing.
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