Rohlin: Since nobody else will say it in the sick baby thread:

I would fark the everloving shiat out of that woman.

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/window seat, please

WTF dude, she is 6 months old!

Cymbal:
So that makes me even more curious. If there are natal genetic scans available for this, then the scan was either inconclusive or not administered/disregarded?

Really hope it's the former.

It's not a common test on the fetus. It's a somewhat invasive procedure where they need to get a genetic sample from inside the womb. We had it done with my son since my wife and I were both carriers.

I do recommend that new parents find out if they themselves are carriers for the disease. It's better to get a blood test done on yourself before you plan on the child being born.

My best friend's son has SMA type 1. He turned 2 in February, and is doing amazingly well. The lengths he and his wife go to to keep him healthy are a true inspiration. She does a online blog as well, mostly for therapeutic reasons. There is a doctor in Ohio that is doing some interesting research on preventing, and possibly curing SMA if anyone is interested Here is a link to his research.

Smoky Dragon Dish: AngryJailhouseFistfark: Satanic_Hamster: Eh. It's not like the kid at that age will remember any of it.

(yes, i'm going to hell)

I'll hold your coat. It seems to me this "bucket list" is really just one item:

Sell my Tragic Story so Mom and Dad can get Global Sympathy.


This is an attention whore ploy by the parents. Sure, I sympathize. I have two kids and I hate the thought of them in any distress, let alone living with a Guaranteed to Die in N Years condition. But making list of things the kid won't even be aware of, let alone remember? Up to age 2 all a kid knows is "is my belly full/sleep/is my ass on fire from diaper-rash/I think I recognize that face that makes food for me".

I find it revolting.

In 2006, Mike Canahuati came up with an idea to start a cancer nonprofit group called Insure the Cure because both his parents died of cancer by the time he turned 20.

I find attention whores revolting too. What an asshat. I mean, seriously. His parents die of cancer, and he starts a charity.

Link

Wow, these folks are almost as bad as those Lemonade Stand people and their nefarious funding of grants and research to prevent, cure and care for children with cancer. They should all be ashamed of themselves.

Having been a hospice patient care volunteer for 10 years I have seen people use many avenues to cope with catastrophic loss and grief. These people deserve whatever satisfaction they can get from documenting every single experience with their child since they will be deprived of a future with her.

Noone facing this kind of tragic loss should be criticized as an attention whore.

I hope those who think they can sit in judgement of these people are never in this situation.

That's beautiful but so soul crushingly sad all at once.

Yeah, yeah, yeah, something about taking your personal tragedy and turning into public spectacle.


It's vulgar.


What a shame these healthy beautiful people couldn't have an equally healthy beautiful baby. Lots of photos a pretty, smiling mom, though. Why, she's just Made for TV.

Tell me this, if it was some dumpy hausfrau and her mullet-headed, day-laboring gomer baby-daddy, would there be so much love from you fark-knobs?

Please God, never take my beautiful child away from me.

AngryJailhouseFistfark: Tell me this, if it was some dumpy hausfrau and her mullet-headed, day-laboring gomer baby-daddy, would there be so much love from you fark-knobs?

Yes because either way their child is dying.

192872) Get mom and dad to spend every moment they can with me and have the stop wasting time promoting their bucket list for me in the media.

AngryJailhouseFistfark: Tell me this, if it was some dumpy hausfrau and her mullet-headed, day-laboring gomer baby-daddy, would there be so much love from you fark-knobs?

You do have a point, and the "gomer" bit did make me chuckle, but I want you to know I am still crying on the inside for this family.

Cymbal: AngryJailhouseFistfark: Tell me this, if it was some dumpy hausfrau and her mullet-headed, day-laboring gomer baby-daddy, would there be so much love from you fark-knobs?

You do have a point, and the "gomer" bit did make me chuckle, but I want you to know I am still crying on the inside for this family.

I am too, believe me. When my son was born he was blue and they snatched him away to the NICU. I was at Georgetown hospital, one of the nation's pre-eminent medical facilities, and had the doc say, "Your son's not breathing and we don't know why." I understand parental pain.

If this brings them comfort, very well. Still seems vulgar to make it a Big Public Affair.

AngryJailhouseFistfark: Cymbal: AngryJailhouseFistfark: Tell me this, if it was some dumpy hausfrau and her mullet-headed, day-laboring gomer baby-daddy, would there be so much love from you fark-knobs?

You do have a point, and the "gomer" bit did make me chuckle, but I want you to know I am still crying on the inside for this family.

I am too, believe me. When my son was born he was blue and they snatched him away to the NICU. I was at Georgetown hospital, one of the nation's pre-eminent medical facilities, and had the doc say, "Your son's not breathing and we don't know why." I understand parental pain.

If this brings them comfort, very well. Still seems vulgar to make it a Big Public Affair.

FTA, they created a blog. Just like a million other parents whose kid has SMA, or pediatric cancer, or cerebral palsy or any other horrendous medical issue. I don't think they had any intention of it going viral any more than any other parent who has one.

AngryJailhouseFistfark: Still seems vulgar to make it a Big Public Affair.

I tend to agree. It isn't very dignified.

I don't think I would do anything public if my daughter was similarly diagnosed. Less time on the net would mean more time with her.

But the pictures of the baby's illuminated eyes are very sad. The lights are just coming on, and soon they'll go right back out.

My husband and I found out we were both carriers during my pregnancy. We knew I would be a carrier since my mom has SMA type 2 but we were floored by the news that he was a carrier since there was no one in his family with SMA. There was a 1 in 4 chance that she would be born with SMA. And apparently about 1 in 200 people in North America are carriers.

Today is our daughters fifth birthday, who is also a carrier but does not have SMA.

For any parent to have to go through having an infant with SMA type I is awful. I was a mess just waiting for her results to come back.

Going to go hug my daughter now.

as the father of a 6 month old, i cannot imagine a worse feeling right now. Thank god/jeebus/science she's happy healthy and will hopefully live a long and happy life. My heart goes out to these two, they are a lot stronger then i could have been in the same situation...

MsStatement: AngryJailhouseFistfark: Cymbal: AngryJailhouseFistfark: Tell me this, if it was some dumpy hausfrau and her mullet-headed, day-laboring gomer baby-daddy, would there be so much love from you fark-knobs?

You do have a point, and the "gomer" bit did make me chuckle, but I want you to know I am still crying on the inside for this family.

I am too, believe me. When my son was born he was blue and they snatched him away to the NICU. I was at Georgetown hospital, one of the nation's pre-eminent medical facilities, and had the doc say, "Your son's not breathing and we don't know why." I understand parental pain.

If this brings them comfort, very well. Still seems vulgar to make it a Big Public Affair.

FTA, they created a blog. Just like a million other parents whose kid has SMA, or pediatric cancer, or cerebral palsy or any other horrendous medical issue. I don't think they had any intention of it going viral any more than any other parent who has one.

Unless you know the parents personally, I don't think you can accurately convey their intentions for the blog. That being said, I can't fault them for it if it helps them cope. But if they just did it for the attention, then fark all.

AngryJailhouseFistfark: Yeah, yeah, yeah, something about taking your personal tragedy and turning into public spectacle.


It's vulgar.


What a shame these healthy beautiful people couldn't have an equally healthy beautiful baby. Lots of photos a pretty, smiling mom, though. Why, she's just Made for TV.

Tell me this, if it was some dumpy hausfrau and her mullet-headed, day-laboring gomer baby-daddy, would there be so much love from you fark-knobs?

Now, now. There you go being honest. There no need for that.

AngryJailhouseFistfark:
Tell me this, if it was some dumpy hausfrau and her mullet-headed, day-laboring gomer baby-daddy, would there be so much love from you fark-knobs?

Dying baby and caring parents that have to deal with it, wouldn't change a thing.

I still don't know why you brought your parents into this though.

Rohlin: Since nobody else will say it in the sick baby thread:

I would fark the everloving shiat out of that woman.

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/window seat, please

I don't know, given the situation, I don't think that would be much fun. Unless you like it when they cry throughout. Now if you had a time machine and farked her ten years from now or five years ago, I'd be on board with this.

chasd00: holy crap that's sad

/father of 2 year old and 6 week old

It's not any better when the kids are grown and out of the house making their own way through life as my daughter is. She's 19.

voristrupp: Having been a hospice patient care volunteer for 10 years I have seen people use many avenues to cope with catastrophic loss and grief. These people deserve whatever satisfaction they can get from documenting every single experience with their child since they will be deprived of a future with her.

Noone facing this kind of tragic loss should be criticized as an attention whore.

I hope those who think they can sit in judgement of these people are never in this situation.

THIS x 10.

#10: Drink breast milk until I puke
#11: hold my breath for over five minutes
#12: win a staring contest

jst3p: Alonjar: This is the saddest farking thing ever.

Challenge accepted.

My daddy ate my eyes

Holy shiat!!! Wtf is wrong with some people? They should give that guy his hatchet back and tell him to finish the job. Then use his remains for fish bait. I hope when he dies he burns in hell!

I really feel for this little girl.

jackandwater: jst3p: Alonjar: This is the saddest farking thing ever.

Challenge accepted.

My daddy ate my eyes

Holy shiat!!! Wtf is wrong with some people? They should give that guy his hatchet back and tell him to finish the job. Then use his remains for fish bait. I hope when he dies he burns in hell!

I really feel for this little girl.

1 new comment mentioning you found in link 7078905...

/we're both going to hell

That is so sad. As a mother of a one year old girl...if she wasn't taking a nap I'd hug her really hard...

I'm feeling for them.

jst3p: Alonjar: This is the saddest farking thing ever.

Challenge accepted.

My daddy ate my eyes

There is sad, and then there is just so farked up my brain wont accept it. This is the latter :/

I guess I'm not going to hell fast enough, so;

Spinal Meningitis (Got Me Down) Lyrics
Artist: Ween

Why they wanna see my spine mommy?
Why they wanna see my spine?
It's gonna hurt again mommy
Much worse than last time
Am I gonna see God, mommy?
Am I gonna die?
It really hurts mommy!
Am I gonna die?
Smile on mighty Jesus
Spinal Meningitis got me down

I'm feelin' greasy mommy
Please don't let me die
Stinky vaseline mommy!
Please don't let me die
Am I gonna see God, mommy?
Am I gonna die?
It really hurts mommy!
Am I gonna die?
Smile on mighty Jesus
Spinal Meningitis got me down

http://i.imgur.com/a8s88.jpg

If only there were a more intelligent designer.

Cymbal: gbob23: Cymbal: Just curious, is SMA, and severity level of it, something that can be tested for in utero?

It's actually the number one genetic cause of infant deaths.

Parents can be tested to see if they are carriers for the disease.If you are a carrier (many people are) and so is your spouse, then your child has a 1 in 4 chance of developing SMA. There are also natal genetic scans (which my wife and I had done when she was accidental pregnant with my son)

There's a wide spectrum of types of SMA. Some don't manifest until adolescence.

It's worth reading up on. It's amazing how little knowledge there is of it.

So that makes me even more curious. If there are natal genetic scans available for this, then the scan was either inconclusive or not administered/disregarded?

Really hope it's the former.

Like about 99 44/100% of genetic diseases that do NOT have a known tendency to be carried in certain ethnic groups, generally tests AREN'T given for rarer genetic diseases unless there's a good reason for it like a family history. :(

Pretty much the only genetic diseases that are regularly tested for before birth (in populations where there would NOT be an obvious reason like ancestry to test for certain diseases) tend to be tests for chromosomal disorders (like the trisomies--trisomy 21, trisomy 18, trisomy 13 and so on)--generally these tests are conducted in conjunction with tests for neural tube defects.

Even the most common metabolic diseases (PKU, maple syrup urine disease, and about forty-some-odd others) are only tested for at birth...and testing for even THESE tends to be spotty from state to state, with only the common amino acid metabolic disorders and leukodystrophies commonly tested for at birth.

Pretty much, anything else they only really test for if you're part of an ethnic group that has a known high incidence of a certain disease (for example, Tay-Sachs testing is common among Askenazim, Cajuns and Quebecois...and even then it doesn't catch rare sporadic mutations; certain diseases known as "Amish heritage diseases" tend to be tested for among Amish families, "Finnish heritage diseases" get tested for in folks of Finnish or Sami origin, sickle cell anemia and thalassemia testing are common among folks of African-American descent and Mediterranean descent respectively, and fumarase deficiency screening is now common for folks who are descendants of FLDS groups that keep "plural marriage").

Otherwise...the sad thing is, they pretty much only tend to catch it when babby is sick and they've ruled out everything else and the geneticist gets the results from the very expensive test that tells that babby has an incurable and terminal genetic illness. :(

/yes, I read OMIM a good deal...I wouldn't quite say it's for lulz though, because if you think about most of the diseases there they tend to be rather horrible and incurable things that kill babbies and/or render them in the "less counting to potato and more being potato" level of being severely multiply handicapped
//more than a few of these diseases, especially those with no treatment and no method of management (a la PKU or MSUD) would be arguable grounds for euthanasia IMHO

Vermicious Knids: Cymbal: Just curious, is SMA, and severity level of it, something that can be tested for in utero?

You and your spouse can get tested to see if you carry the gene for SMA (which one in 40 do). If you both carry the gene, you have a one in four chance of having a child with SMA.

The sad thing is...unless some program is started to do genetic testing a la what is done with Tay-Sachs in Ashkenazim communities (free testing, pretty much you are let known privately if you and your prospective spouse are incompatible)...that and unless and until clear genetic anti-discrimination laws are in place (or single payer healthcare such as pretty much every civilised country and even a lot of only semi-civilised countries have is in place that guarantees coverage to all who need it)...

...people are going to be damn reluctant to get testing, if only because they have a very real concern they or their kid is going to be turned down for insurance because of a "pre-existing condition".

And yes, I do have a dog in this hunt, so to speak--there's a good shot (based on family history) I may be a carrier of Lynch syndrome--which is a genetic "cancer syndrome" where the risk of colorectal, reproductive system, pancreatic, and some other cancers are much higher than the population at large. I probably SHOULD get tested for it, and my gastroenterologist has recommended it, but I don't want to risk being bobbited from the health coverage of my SO (even for routine stuff like, oh, colonoscopies to make sure I don't HAVE a "Lynch syndrome nasty" lurking in my gastrointestinal tract) because I had the "pre-existing condition" of having a particular broken oncogene inherited from my parental unit. :P

(I'm not counting the supposed genetic-anti-discrimination provisions in Obamacare until those particular chickens have hatched--still up in the courts TOO much for my liking.)

Ugh, the thought of losing my daughter like that... Well, the thought of losing her in general. I'd find it hard to just carry on like these two are with their daughter.

what's the difference between Muscular Dystrophy and Muscular Atrophy?

You Are All Sheep: If only there were a more intelligent designer.

I hear you, brother.

Pass the Zyrtec.

Third_Uncle_Eno: what's the difference between Muscular Dystrophy and Muscular Atrophy?

Dystrophy = abnormal development

Atrophy = partial or complete wasting

/surprised and happy at the lack of sheer assholes in this thread

imfallen_angel: All I can say is good luck to them, and that they go get some wonderful times with their child, as I can honestly say that I understand them but on a different level.

My daughter is severely autistic (almost 20 but is the equivalent of a 1.5 year old baby in most ways), and there's so many things that she will never get to enjoy due to this. While we do our best for her, she's also got the family held as hostages as we've not been able to do anything together outside the house for many years as she cannot be around other people and gets disoriented (hence agitated and violent) in unfamiliar places. We have absolutely no support.

So how do I understand these people?... in the sense that she is simply living day by day, but only to die without more than the life we can give her. She loves her music, plays with her toys, but cares mostly about food thanks to a doctor that screwed her up with medicine causing her to develop irrational hunger, (the medicine was supposed to help control her aggressiveness that became very bad) , so she's now overweight and controlling her food intake is quite a challenge as she can't lose the weight even if she is no longer on that medication, the "addiction" stayed.

I love her with all my heart, as she is a pleasure to have around (aside the tantrums), but I have admitted freely that I fear for her and the others (my wife and the other kids) that if something was to happen to me, that they'd be the others stuck looking after her, so even if it kills me to say it, I hope that her passing will be before mine, so that I can ensure to be there for her and the others.

I so wish that she'd be able to recover, a miracle cure would be found, but the reality is what it is. We do everything to ensure that her life, limited as it is, is as happy as we can make it.

I wanted to say I was very shaken by your post. I hope you are able to find minor miracles each day.

Random Thought: anyone ever see the twlight zone episode where the criminal dies, and he goes to a place where he can have anything he wants, and he thinks it's heaven, but he gets so bored, we eventually find out it's actually hell. Well, I always thought I could deal with that and it wouldn't be that bad, I could re-live any memory, and make up new fantasies. Sure it would be for eternity, but i'de try not to think of that, and just focus on what I was going to do at that one moment.

Anyway, I was looking up the movie Groundhog Day, as you do. And then I got to an article about a short story called 12:01 (which repeats every hour instead of every day). That got me thinking, I was at work at the time, but if there was a time loop right then, that lasted an hour, what would I do? That's kind of like the twilight zone episode, cause I could do anything I wanted, complete control over the universe. Sure nothing really changes, but I'de still have complete control over my universe. Then I thought I'd want to play with my kids, my son who's almost 2, and my daughter who's just 6 months. I'd pick them up from daycare, and play with them, get my son's belly till he's in histerics. But near the end of the loop I'de have to say goodbye, and at the beginning of every loop it'd be like nothing I did ever happened, or mattered... Now i'm starting to see how that could be hell. For the rest of eternity I only get to experience 1 more hour of my kids life.

And just so you all don't think i'm a big softy:


Hopefully something that doesn't make the bucket list:

Go to the ER for related injuries, get diagnosed as being abused, get taken away from my family, get my Father accused of physical abuse, split up my parents and the rest of my family, create so much despair and guilt in my Father that he takes his and my Mother's life.

I know this is f-ed up to say, but considering it actually happened, and the hospital that did the diagnosis is completely cleared of any wrongdoing, that's what's really f-ed up. Their claim is that they couldn't foresee the father going crazy, at least not to the extent that he did. I can see it, if a completely innocent man takes his baby to the hospital, then they take the baby away, accuse him of child abuse, convince everyone he knows that he's some monster, and his only chance is to accept the guilt and plea bargain, so he's only in jail for 25 years instead of 50. Yes, I can see someone going crazy, and suicide becoming an available option, and then who knows what else they'll do.

So the baby in the article actually died yesterday :/

Alonjar: So the baby in the article actually died yesterday :/

From the blog:

Hello everyone this is Avery's father. Avery passed away yesterday sometime around 3pm due to pulmonary complications related to SMA. In short, one of her lungs collapsed and she went into cardiac arrest. I immediately performed CPR on her and was able to bring her back to life, but only for a brief period of time before she passed away shortly after arriving at the hospital. Avery's passing this quickly came as a complete shock to all of us, as she had just been given a thumbs up at her last doctors appointment only three days ago. While we were aware of the severity of her diagnosis, we never lost hope for Avery and even in her passing, we still have hope for our daughter and all of her friends.

whitey_d: Alonjar: So the baby in the article actually died yesterday :/

From the blog:

Hello everyone this is Avery's father. Avery passed away yesterday sometime around 3pm due to pulmonary complications related to SMA. In short, one of her lungs collapsed and she went into cardiac arrest. I immediately performed CPR on her and was able to bring her back to life, but only for a brief period of time before she passed away shortly after arriving at the hospital. Avery's passing this quickly came as a complete shock to all of us, as she had just been given a thumbs up at her last doctors appointment only three days ago. While we were aware of the severity of her diagnosis, we never lost hope for Avery and even in her passing, we still have hope for our daughter and all of her friends.

Damn. My heart hurts for them. That's just freaking awful.