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StormKnight

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It's cool. When you were single I did everything in my power to help you out no matter how depressed you were. Now you're in a relationship and you want a 3rd so I should stop going after this one girl (with whom I'm confident for the first time in a long time) because it will bum you and your wife out.

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It's cool. When you were single I did everything in my power to help you out no matter how depressed you were. Now you're in a relationship and you want a 3rd so I should stop going after this one girl (with whom I'm confident for the first time in a long time) because it will bum you and your wife out.

rough. :grouphug

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It is miserable 100 degree hot out and more than half the area has no electric. The gas stations that are still open look like end of the world mass hysteria, passed an Exxon yesterday that had over 50 cars lined up out into the street.

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Im wondering why companies like Mansanto are hacking the E.Coli virus and using genetic manipulation to create GMOs ("")

to better mankind's food supplies, yet we refrain from using similar technology (in vivo) to make corrective manipulations

to the dna of individuals in our special needs populace. ...I thought that was why the Human Genome Project kicked off in

the first place??

It really frustrates me that in the year 2012, this

is the closest we have come to tackling a chromosomal abnormality at it's core (in humans).

I won't accept that we don't have the technology or available funding to do something even MORE RADICAL than human flight and

space exploration.

...my 13 year old daughter Andramada* is asleep in her room, and will remain asleep only due to the medication she has been given. My child,

(nicknamed "Drama" at an early age

suffers from a rare chromosomal abnormality known as Smith Magenis Syndrome,

(a microdeletion of the p arm on the 17th chromosome). (She is cognitively at the level of a 2 year old, limited verbal, 40 IQ, and quite

accurately fits the steriotype for individuals with this disorder, including physiological (which I believe included the total anomolous pulmunary

venous return heart surgery she had at 6 months old, and her (surgically corrected) unilateral cleft lip and palatte) and psychological,

including severe self injurious behavior

and behavioral problems, an inverted circadian rhythm (which contributes to her lack/non existant (?) REM cycle /short periods of sleep.

This disorder is not heredetary (noone in my family or her mother's were 'carriers').

When she was born, when I wasn't with her at the hospital, I was in optimistic contact with geneticists, inquiring to implementing genetic therapies...

and as the years went by, as the skins of tomatoes were modified to endure shipping, my daughter's realization of a 'cure' has not come into fruition,

and my optimism has turned into burnout.

In many ways, she reminds me of Claudia, the character in an Anne Rice novel, a child who will never grow up.

Sure, it isn't fair, to her, to the kids at her special needs school, and to those whom society continues to

push under the rug... (btw this is the reason I ADORE the character TIMMY and JIMMY from South Park. IMO they are the voice of the giant

middle finger on behalf of every special needs individual whom is unable to say 'fuck you' to every POS who ever preyed upon them with

cruelty (including mockery etc) but I believe what is most unfair is the lack of progress in general in actually using our technology to

make progress. Progress like cures. ...so I can take her to see the new Disney/Pixar film and not have to worry about her punching herself in the head

and throwing popcorn at the people in front of us or throwing her shoes or causing herself to bleed everywhere and or ripping off her

diaper and getting feces and uring all over the movie theater/car etc... instead of waiting for the movie to come out on DVD... or IDK, have

a conversation with her that was more in depth than 'are you hungry?' 'wash your hands', 'please stop hurting yourself'...

*sigh* maybe if I dressed her like a tomato I could get some fucking results.

What does amaze me is that there are people out there, people like Eliza Newman (who used to be my daughter's classroom aid) and Servitor Sean, whom have dedicated

themselves to helping out the special needs community. They don't receive recognition for it, and the 'thank you's' are few and far between.

If anyone has bothered reading this, especially anyone whom is considering what career to follow, Id like to strongly suggest exploring the field of genetics.

This world needs ambitious individuals to take on this monolithic task of making genetic disorders a thing of the past.

*I misspelled her name when she was born from the original 'Andromeda', in hopes that the general populace of culture lackers would have an easier

time pronouncing it... which proved to be a waste of thought on my part (commonly pronounced "ahn drah mah dah", like the Ramada Hotel...)(followed

by 'where did you get that name from?' ...if I had a nickle for every time I heard that... *sigh* however, she does have, IMO, a pretty cool/urban

nickname: Drama (or Drama Mamma) :p ...ironically, I was unaware of the mythology associated with her name (aside from understanding her name

originated from said mythology)... 'a maiden chained'... and while the million acre fire of optimism I once had for her to be set free has withered

to embers, it still burns, and seeks the tankers of rocket fuel that only scientific research will yield.

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Im wondering why companies like Mansanto are hacking the E.Coli virus and using genetic manipulation to create GMOs ("")

Gene therapy (and the associated science, and most all science really in a sense) still has a lot of either opposition or just lack of enthusiasm politically and socially. Much of it is there and "ready" theoretically, but not technically (needs more time and most of all $$$) As you start talking specifically about editing human DNA/RNA in a way that people can understand the whole "playing god" thing really screws things up (an antique concept that I wish would die already but sadly it isn't). I've long been a "follower" lets call it of genetics and wish they would hurry things up, unfortunately even at the fast pace that science is advancing, just like many soon-to-be wonders of technology they probably wont come soon enough for us.

Your discussion about Andromeda and Claudia was very interesting (I'm familiar with both) the way you made the connections between the concepts and your child were touching.

I'm very sorry to hear about your daughter, I hope things eventually brighten for her. I have no way of imagining the frustration you must feel.

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