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Sunday, August 22, 2010

Anger and Intolerance pisses me off. I'll have none of it!

I will talk politics somewhere in this entry. I think that's a MUCH more important warning than "May contain foul motherfucking language and crude god damned subject matter"

Both are applicable, but I'm trying to prioritize this kind of shit. I'm in one of those mental place where I'm trying not only to organize this crap in my head, but to really take it to heart.

  If anyone is offended by such content: Make a fucking law against it, shit-for-brains.

  Nobody ever read my shit on MySpace, so I've gotten used to no one reading. These things work like my own internal monologue, as I'm pretty much talking to myself.

  People in masses tend to be stupid. I wanted to say sheep, but sheep are passive. People work waaay too hard at group douchebaggery to be classified as such. And I think I just invented a new concept in porn.

  I think this comes in cycles, like sunspots, but people are forwarding some way stupid shit. Be it facebook, email, text, it's on the rise again. If a message ends with "re-post this if..." or the statistician-verified "93%/99%/82%" etc. "Wont re-post this!" Or anything insisting everyone on your friends list will be sooooooo glad you did because you'll be the first person ever to forward that message to them... don't. Just don't.

  Someone, somewhere, who is probably way too old to still be living with mom, but does because she cant take care of herself after the stroke she had from the realization she was even stuck with you the first eighteen years(after dad took the easy way out; suicide), and gets a thrill out of seeing people send his shit back to him, never knowing it was him all along....

  That is how the chain-post-starting mind-frame is started. Am i the only person offended by the chain posts that try to guilt you into re-posting? That's fucking sick. Guess what? My mother died from cancer when i was 14. She was my best friend and it kills me every day to think a woman like that was taken in such a horrible way.

  You know what? I was in the 93% of people who "wouldn't re-post this" if they wanted a cure for cancer. Who on Earth wouldn't want a cure for cancer? People dedicate their lives working for a cure if it's research, funding, or even simple footwork. But a condescending forward on your facebook status for one hour is all you need to feel like you're helping? You're helping lives-with-mom talk to himself vicariously through facebook.

  There's the more recent warning about a group started by pedophiles. I feel really bad for a couple of reasons: this is really easy to think you are protecting your kids and your friends'. No one can view your photos if they're private. Even if you are a member of their group. If you want to help your friends' kids, tell them the pictures of them  acting like whores and doing drugs should be in SEPARATE folders from the kids. Grrr. Fucking grr.

  The second, when this rumor started, there was never a group with that name. Since then, who could have wanted to start a group with a name like that for no other reason than their children make them know what it feels like to wholeheartedly love another human being so much in can make you cry? And then to get hate email from hundreds calling the person a pedophile?

  All i suggest on that, is before you forward, copy and paste a single sentence of the post into the search at

Read this:

  Even NPR seems to see the stupidity inherent in the masses. There was a "news story" stating some people think Obama's a muslin, some people don't. For once i was impressed. NPR seems to have more facebook posts intended to start moronic "Comments" arguments. This time, a vast majority stated npr should report news and who cares. Thank (insert prophet/deity here) for that response! Unfortunately, like the rest of life, the dumbest are the fewest and so feel they must be loudest.

  People are offended by a "mosque at ground zero". Its actually a couple of blocks away. Notice the tense: is. Its there. They want to expand what they have in a building they own. And have been there waaay before there was a "Ground Zero".

  Also, at the very least, note the spelling of mosque if you insist on being dumb.

  You have the right not to like it. Its part of the "freedom the terrorists want to take away". So by trying to ban a place of worship, the people who are in opposition are taking away freedoms.

  If the mosque is not allowed or tolerated, guess what? The terrorists fucking won.

  Sure, you may argue, its radical Muslims that blew up the WTC. Guess what? Radical Christians were responsible for the Witch Trials, Crusades and the Spanish Inquisition. You should start opposing churches in Massachusetts and Europe.

  Get a dictionary, Look up "radical". If that doesn't help you understand, put down the "my furst dikshunarry", get a real one, and beat yourself with it.

  In the meantime, be a vegan because you're a humanitarian, while not worrying about how many laborers, child and otherwise, endure tremendous mistreatment for little to no pay for the most basic of consumer goods you never give a second thought to. Just think enough about something to feel better about yourself.

  I'm sorry. I didn't mean _you_.

Wednesday, June 2, 2010

What is Rett Syndrome?


From Wikipedia:
is a neurodevelopmental disorder affecting gray matter. The clinical features include small hands and feet and a deceleration of the rate of head growth (including microcephaly in some). Repetitive hand movements such as mouthing or wringing are also noted. Girls with Rett's Disorder are prone to gastrointestinal disorders and up to 80% have seizures. They typically have no verbal skills, and about 50% of females are not ambulatory. Scoliosis, growth failure, and constipation are very common and can be problematic.

The signs of this disorder are most easily confused with those of Angelman syndrome, cerebral palsy and autism.


Rett syndrome is a severe, genetic disorder that affects the way the brain develops. Occurring almost exclusively in girls, Rett syndrome produces symptoms similar to those of autism.
Most babies with Rett syndrome develop normally at first, but their progress often slows by the time they reach 18 months of age. Over time, children with Rett syndrome have increasing problems with motor function that may affect their ability to use their hands, speak, walk, chew and even breathe.

The above is all true. It gives you symptoms of Rett Syndrome. The definition, even clinical description, can't convey what Rett Syndrome is all about.

 My girl, Campbell, was born October 31st, at 11:53PM in 2007. She had problems from the start with her oxygen conversion. It was scary seeing my child have her hands lifted up, and dropped lifelessly. Then came the tubes. 11 days in the hospital, and then she was ready to come home.

She was a very content child. She was always happy, unless she needed food/drink/nap/changing. A very exuberant girl. She had quite the personality.

After a few months, we started noticing she wasn't hitting any of her developmental milestones, like rolling over, crawling, walking, socializing. For the first few months, we weren't concerned. Her overall health was good, and she was happy. Then the time came, a point of no return, when we were forced to acknowledge something was wrong. Not knowing what it might be or what it could mean puts some unpleasant thoughts in your head, let me tell you.

Her mother made an appointment with a doctor to get a genetic test done. Lo and behold, The results came back - R270X mutation: A form of Rett Syndrome. This is the exact moment the world changed forever.

All of a sudden, one gets to know one's self. There were tears, not because of anything that happened to me, I wept thinking of what it would be like for her. I've always wanted her to have every opportunity in the world. There were some selfish thoughts, too. I looked at her and she's smile, and part of me took comfort that this precious little girl would always need her daddy.

She was enrolled in physical and occupational therapies right away. After two months, she was able to hold herself up on all fours - "quadruped position". I didn't expect it, but I certainly didn't expect what happened next. This is one of those moments you wish your whole life you had a video camera handy. I had just that. Watch her - again, she had never so much been on all fours on her own before. Always sitting or laying down.

She was able to stand on her knees! reading the definitions above, knowing 50% of these girls are non-ambulatory, for her to make such progress so quickly, and to be in such good spirits throughout,  it was a ray of hope that nothing could dim. The look of delight on her face was certainly contagious that day.

Developmental and speech therapies were soon added. At home, we also were able to get in-home habilitation specialists to work on therapy goals, and keep things consistant.

Rett Syndrome is a condition in which the protein that forms around synapses in the brain to protect and solidify them isn't produced properly. This lack of MeCP-2 keeps the brain in an immature state. We know how to move our hands, feet, arms, legs and whatnot, because the use of the muscles makes a connection in the brain. The more we use the same muscles the stronger the connection gets. The MeCP-2 protein covers this connection, to keep the connection in place, so we don't have to consciously think about how to move each individual muscle any time we move. The use of the muscles is learned. In Rett Syndrome, girls do not adequately produce this protein, so rather than atrophy, the synapses in the brain remain in an immature state. Always eager to learn, but not always able to hold on to what is learned.

We read of a study, the results of which were published 3 weeks before Campbell's diagnosis, in which laboratory mice that were given the genetic code for Rett Syndrome were injected with IGF-1(Isulin-like Growth Factor) to see if the molecular chain could compensate for the lack of the MeCP-2 protein. In
laboratory models, over the course of 3 years, the symptoms of Rett Syndrome had been reversed.

 This was exciting news, yes, but there hasn't been a single neurological disorder that could be reversed in human history. But there it was - in mice.

 I checked the article, and by finding the names of certain people, we able to locate the hospital that plans on conducting these clinical trials with IGF-1 in humans. I made contact with the people, and we are currently waiting on the start of the trial. Campbell has an excellent chance of acceptance - Can go to Boston once a month, she is the right age (2-14) and her mutation ends with X. There's a reason for that.  I'm not going into it, but trust me.

We saw Dr. Omar Khwajha in Boston, he was part of the team that identified the genetic cause of Rett Syndrome. He had some street cred. The appointment was simple - driving through Boston was not - after looking at Campbell, he said she's very mild symptom-wise. Also, that she should be walking within 1-3 years, and that is her best hope to fight off scoliosis, which is typical of Rett girls.

You've gotten the abridged story so far.

But WHAT is Rett Syndrome?
  I watch Campbell playing and enjoying herself, and it makes me smile to no end. Lately, she's been more fussy than usual, and it puzzled me for a while. She had been so happy. Then it hit me like a load of bricks: Her brain is fully functional, but the muscular control is lacking. She's frustrated. She wants something and doesn't know how she can express her wishes.
  Rett Syndrome basically takes a child away from herself. She wants to say and do so much, but the motor function isn't there. It's like being in a nightmare where you can't scream, but it's real. And it's for life. This little girl with hopes and dreams she's currently unable to express. Kills me to think about, but there is hope right around the corner.

For more information on Rett Syndrome, and stories from more parents and children affected, go to


Wednesday, April 21, 2010

Healthcare - my humble position.

"Opinions are like assholes. Everyone's got them."

Democrats saying Republicans are just being difficult. Republicans calling Democrats Nazis and Socialist for wanting to the the little guy just a bit more power with health insurance companies.

I'm stunned over the misinformation from both sides on this issue. We have the extreme right talking about coverage for "illegals", "death panels" and "rationing" of health care. We have the extreme left trying to sound like this is an instant fix for all of society's woes.

Real health care reform, if by health care, we mean health insurance, not the actual care, would need to be much bolder. Like making health insurance compete like other industries do. Health insurance companies are exempt from antitrust laws, and redlining, as well as price fixing is perfectly fine in their industry. Take those luxuries away, and those motivated by profit will have to work harder for the consumer - better pricing and benefits - to get the consumer's money.

The bill is a very small step in the right direction. It addresses some things that have to be fixed before much else gets done, and sets precedent for more citizen-favorable legislation. No pre-existing condition clause, and no cap on care. AWESOME. People won't be afraid to get preventative care and drive the expenses down, along with overall cost.

The bill specifically excludes people in this country illegally. Saying otherwise gets people angry, but it is an outright falsehood and unproductive argument.

The "penalty" of $625 a year if you don't get insurance is to offset the fact people who don't get insurance by far have more emergency room visits because they wait too long because they don't have health insurance. If one can't afford reasonable premiums, how can they afford hundreds if not thousands in unanticipated medical bills? A lot of this doesn't get paid, and goes back to the taxpayer. Not having coverage costs more tax money, so it makes sense. Guess what else? $625 is maximum. It's tiered or even waived outright for people making under $40k.

If starting the process of taking care of human beings properly is in any way what Hitler wanted to do, I really have to re-read history books.

The arguments against that make any sense are 1) cost and 2) it doesn't do enough. Cost is speculative at best, and years of research, not to mention common sense, indicates preventative medicine will lower cost and increase productive quality of life. No bill as the first healthcare change in decades could do everything at once, nor should it. It will take time and patience. The system hopefully will adapt, people can be more productive as we work towards the rest of the changes that are so badly needed.