🤝 Community Tard Baby General (includes brain dead kids) - Fundies and their genetic Fuckups; Parents of corpses in denial

[MysticMisty]

The only reason we now know that a significant population of people with Down syndrome develop dementia (with rapid progression to boot) is because so many of them are now living to middle age and beyond. The vast majority used to never live that long because of serious heart defects: it's extremely prevalent among them because trisomies fuck up everything with the body. Some have such serious heart defects that they're born with congestive heart failure, something most commonly seen in old people. But due to significant advances in treating heart conditions, they're living so much longer. And dying of rapid onset dementia/Alzheimer's instead of heart failure. It's proof that even though DS is technically considered to be compatible with life, it really isn't.

 

[Android raptor]

Is it possible to use adults with downs with less severe intellectual disabilities (i.e. able to consent) to test drugs to prevent alzheimers? Lord only knows I doubt they want to get it any more than anyone else, plus I know I've seen ads for drug research specifically looking for people with other conditions like schizophrenia.

 

[NotYourMom]

Archive of Video:
Tinslee.mp4

Unsure if its a seizure but its definitely not coordinated movement.

Fucking hell that was hard to watch.

It is like watching Frankenstein’s Monster come to life or a robot-child get electrocuted.

Twenty-four million dollars in medical treatment and that is the end result.

Her mother laughing at her while she spazzes around in the video is creepy as fuck and shows a serious disconnect from reality. I really think she is keeping the baby alive for all of the attention and ass-pats it gets her at this point.

The baby should be allowed to die with whatever dignity she has left.

 

[Sparkling Yuzu]

Some wholesome news. I only wish they were pushing gene therapies even quicker through the pipeline. The alternative for these disorders is death, and the sooner for gene therapy, the better.

(Also fuck doctors who say serious d.d.s are normal. Backsliding is ESPECIALLY not normal).

Is their tard baby adopted or did they really have her at such an advanced age? No wonder she has a rare genetic condition. Advanced parental age plus the founder effect in Scandinavian genetics.
We live in a very dysgenic society. It's physically reckless but financially smart to have kids in your later years. Even regular environmental factors like processed foods and pollution can degrade gamete quality. WGS is still not routinely used in developmental disabilities despite so many genetic conditions causing intellectual disabilities. It's culturally acceptable to have a fucked up baby and then decide you wont breed anymore or even worse 'try again' for a normal one, instead of making genetic screening available to everyone looking to conceive. It shouldn't be a rich people thing, it should be standard. All embryos should be screened. It would be cheaper in the long run to prevent horrible conditions.
One dumbass family I saw on the news about COVID vaccination in children ALL had CF! All three elementary school aged children! Why did the parents keep going and bestow this horrible fate on innocent lives? Now they're all at risk of getting nuked by the fatty boomer disease COVID. We should be incentivizing young healthy people to breed.
Hard to believe there are honest to Gods MDs who claim developmental regression is normal. They must be trying to reassure the family and not freak them out. They have to know basic neurology enough to know kids are supposed to go through stages at approximate times.

I just did some Googling, and it doesn't look like anyone ever released a cause of death. Kid just stopped breathing one night and that was that. The family kept going with the resurrection thing for six days. Of course their church started a GoFundMe "for unexpected expenses" that made over $50K. Guessing no one got their money back after Jesus failed to come through.



That was when it was at its peak, yeah, but there are some hardcore evangelicals out there who continue to think that D&D teaches witchcraft and Satanism. They're a minority at this point, but they're still out there, and they're exactly the kind of people who'd be following that couple on social media.

Weird how the family and it's megachurch will whore out a dead baby girl's corpse to the media and make fantastical claims but then never even reveal what actually killed her. Sketchy sketchy.

Prion disease terrifies me. Always has from the moment I heard of it. It must be a hideous way to die.

Spoiler: I live in what's possibly a new prion disease hot spot

We currently have a mystery disease where I live. It has the symptoms of CJD but, so far, medical researches think it isn't one of the identified prion diseases. No one knows where it came from or why so many cases have arisen in such a short time in a somewhat sparsely populated area. Doctors can't even say if it is or isn't contagious, though I imagine it's linked to something in our diet; folks in the two affected areas consume a fair amount of wild game and seafood. There's a cultural, and genetic, link between the Acadian Peninsula and the city involved as well so there's lots to look into before coming to a conclusion on potential causes.

Added fun - The outbreak only came to light due to a leaked internal public health memo.

One of several CBC articles on the subject

Maybe it's genetic? There are rare prion diseases that are genetic and Gods know a shitty backwater like NB isn't going to be getting them proper genetic counselling. There's also a lot of French Acadians that are genetically similar.

 

[MirnaMinkoff]

A rubella outbreak was what changed the tide of American public opinion on abortion, because suddenly so many women were having severely disabled babies. I wonder what would happen if we had a similar virus now in the US. (Rubella is mild in adults).

It actually put the abortion in the public discussion after decades of it being something quietly or secretly discussed.

https://www.sciencehistory.org/distillations/podcast/roe-v-wade-v-rubella

I believe someone posted an article in this thread quite a while ago about a mother whose now-adult daughter is profoundly disabled as a result of congenital rubella syndrome. She was born prior to Roe, and her mom has become a crusader for abortion rights. Obviously, she can't do anything to help her daughter, who is institutionalized and doesn't recognize her, but she believes she can help prevent other kids from similar suffering. It was a sobering read.

That was me. Her name was Dortha Biggs, her daughter Lesli. Here’s a story from a few years ago when she spoke out against Texas legislators trying to ban “wrongful birth” lawsuits, which Biggs set the precedent for.

https://fox8.com/news/i-would-have-had-an-abortion-mother-files-wrongful-birth-lawsuit-48-years-after-having-disabled-daughter/

Another sobering read is what Sherri Chessen went through in 1963.

https://www.google.com/amp/s/amp.azcentral.com/amp/82957074

She was the beloved host of Romper Room, pregnant with her fifth child. Her husband had taken students on a European trip and brought back thalidomide. She took it to help with morning sickness (she was pregnant and hosting an early morning child’s show, plus raising four kids). A month or two later the horrible birth defects caused by thalidomide were making the news worldwide and she was terrified. She contacted a newspaper anonymously, wanting them to run a story to help warn women in the USA who might be in a similar situation.

She was going to have an abortion privately in AZ but then a newspaper outed her identity, no body would help her. she ended up having to go to Sweden to have the procedure. (The doctor reported the fetus had no legs, one arm and wouldn’t have survived birth) The entire ordeal was splashed all over the newspapers and she lost her job as host of Romper Room. (She went on to to get pregnant and have a healthy fifth child after this awfulness)

 

[GenociderSyo]

Is it possible to use adults with downs with less severe intellectual disabilities (i.e. able to consent) to test drugs to prevent alzheimers? Lord only knows I doubt they want to get it any more than anyone else, plus I know I've seen ads for drug research specifically looking for people with other conditions like schizophrenia.

IRBs would be against this because people with intellectual disabilities are protected populations. Also the issue they have that causes them to get alzheimers at higher rates would not be an issue the general population has so the data gathered would not be generalizable. Also, someone with intellectual disabilities may be unable to give informed consent which is required for participation in research.

To give an idea how strict IRBs are I wanted to research the current trend of transgender being pushed onto children because transgender is protected population this was not allowed for me as an independent researcher. You will notice though their own organizations ARE allowed to do research though.

 

[Hongourable Madisha]

I wonder if the trend for international adoption is because these parents are getting the kids from countries with less restrictive rules than their home countries. Different countries seem to come and go in popularity as their governments tighten or loosen the laws. For a long time, people were buying babies or surrogates from India until the Indian government cracked down on it, now it's Ukraine and Thailand. Perhaps if these families had to be approved by a social worker in their own countries, they wouldn't pass muster, but they can buy a kid from somewhere else.

 

[A Detachable Penis]

It's a great idea, Dr. Mengele, but good luck getting any IRB outside of like, North Korea to sign off on using disabled people for research subjects.

I'm just giving you shit, of course, but there are always Appswe transgenic mice! Bonus: they're cute little buggers.

Is it possible to use adults with downs with less severe intellectual disabilities (i.e. able to consent) to test drugs to prevent alzheimers? Lord only knows I doubt they want to get it any more than anyone else, plus I know I've seen ads for drug research specifically looking for people with other conditions like schizophrenia.

Precisely. Those who could consent I'm sure would be fecking thrilled to possibly treat a disorder they're definitely gonna get. There's also some really benign treatment possibilities that could get approval for super speds (like, literally just anti-inflammatories).

A lot of money has been wasted on trying to break up the plaques after they develop, but it simply doesn't seem to wanna work (6% encephalitis in treatment group I recall in one discontinued study). However, even some adaptation of these drugs could work for before the plaques ever develop.

IRBs would be against this because people with intellectual disabilities are protected populations. Also the issue they have that causes them to get alzheimers at higher rates would not be an issue the general population has so the data gathered would not be generalizable. Also, someone with intellectual disabilities may be unable to give informed consent which is required for participation in research.

To give an idea how strict IRBs are I wanted to research the current trend of transgender being pushed onto children because transgender is protected population this was not allowed for me as an independent researcher. You will notice though their own organizations ARE allowed to do research though.

Yeah, it's disappointingly though, because they really are model patients for this. The only sort of variable that you'd maybe have issue with is heart problems because the cholinergic system in the brain is linked to autism, so vascular issues do seem to affect it.

But, it's not like any study for a polygenic disorder can actually control all variables. This is another reason why the clinical trial results and some treatment results are all over the place/not successful: the sample sizes drop off during the trials. As the size shrinks, the effects of random variables on the results increases. Normally, a sufficiently large sample size is gonna drown out the effects of heart disease or undetected things, but we've got small samples and a polygenic disease.

 

[GenociderSyo]

Interesting articles about how it differs from regular Alzheimers. There appears to be a lot of research already into it.

Journal Article​

 

[Thomas Eugene Paris]

Precisely. Those who could consent I'm sure would be fecking thrilled to possibly treat a disorder they're definitely gonna get. There's also some really benign treatment possibilities that could get approval for super speds (like, literally just anti-inflammatories).

A lot of money has been wasted on trying to break up the plaques after they develop, but it simply doesn't seem to wanna work (6% encephalitis in treatment group I recall in one discontinued study). However, even some adaptation of these drugs could work for before the plaques ever develop.


Yeah, it's disappointingly though, because they really are model patients for this. The only sort of variable that you'd maybe have issue with is heart problems because the cholinergic system in the brain is linked to autism, so vascular issues do seem to affect it.

But, it's not like any study for a polygenic disorder can actually control all variables. This is another reason why the clinical trial results and some treatment results are all over the place/not successful: the sample sizes drop off during the trials. As the size shrinks, the effects of random variables on the results increases. Normally, a sufficiently large sample size is gonna drown out the effects of heart disease or undetected things, but we've got small samples and a polygenic disease.

It's a fine line to walk, balancing the possibility of alleviating symptoms while remaining realistic. I'd think care would need to be taken to keep from coercing the subjects. Desperate people can't give informed consent, and if you tell someone, hey we might be able to help your kid, of course they'll agree, regardless of side effects. A lot of these disorders and conditions are the kind of thing where nothing can be worse, but one needs to be really careful where they draw that line. Sure, it's hard to make the outcome worse for someone in a persistent vegetative state, or for a kid with the later stages of Tay-Sachs. It's when you start looking at high functioning people with intellectual disability, relatively mild physical impairment, stuff like that where you have to worry about what you'd be taking away if your experiment went wrong. If your dementia drug gives 10% of patients a fatal encephalitis, that's a huge risk for a person with DS who is happy, has a job and relationship, but expresses anxiety about the possibility of a poor outcome in the future. Yes, the patient might be so frightened by the idea of early onset Alzheimer disease that she agrees right away, but when your treatment kills her or hastens her developmental regression, you have taken a lot from her. I mean, no drug with the profile I've ever described would make it to a Phase I (human) trial, and if for some reason, a drug that did make it to Phase I started having unexpected toxicity in some patients, that would be the end of it. No IRB would let you keep offering your trial to those subjects who were willing to risk it. The Phase I trial is designed to determine the safety profile of a drug. Basically, you use previous animal studies to guess what an effective but not fatal human dose would be, then you start giving your new drug to subjects at different doses, and when a certain fraction of one dose group have side effects too bad to continue, you've determined your therapeutic range. Your hope at that point is that some of the subjects had a decent benefit before having toxicity. Phase I compounds are really a last shot for most people, and no one who needs a trial like that expects to live long enough to benefit from the data they provided. A huge percentage of the drugs tested t Phase I do not ever see market. I think the current success rate is around 10%.

Incidentally, I've seen some of the benign treatment options administered to profoundly brain damaged adults with favorable results, but all benefits reported were subjective on the part of the caregiver (e.g. less irritability, improved sleep, diminished crying). Specifically, one caregiver claimed to see some improvement of symptoms upon addition of pharmaceutical-grade caffeine to a patient's ketogenic enteral formula. None of the subjects really had any quality of life to lose, and even a small reduction in suffering was hailed as a huge moment for them. The "treatment" (really more like a nutritional supplement) still needed to be super low risk.

 

[A Detachable Penis]

Interesting articles about how it differs from regular Alzheimers. There appears to be a lot of research already into it.

Journal Article​

By the time the disease becomes clinically manifested, I'm not sure we can fully tease out its mechanism of action. The brain pretty much freaks the fuck out and everything goes wrong. Any approved and good prospective treatments are just trying to calm it the fuck down or replace the damage.

(I am increasingly inclined to believe that APP/PSEN mutations are a different disorder than APOE ones, but by the time the clinical signs show up, the brain is falling apart in ways that appear similar. As such, what we learn from one isn't helping treat the other.)

Also, as for the encephalitis thing, well... no one said all clinical trials were made equally. It was worth a shot, considering dementia is horrible, but the writing was on the wall that that was gonna happen.

Anyway, yeah it's an ethical minefield. I do think that if the alternatives are a slow and horrible death, we definitely need to be more willing to allow people to participate in clinical trials, including children and ID people. Obviously all the horrid shit that can and did happen is why we worry.

I think for disorders like Tay Sachs, just fucking do it.

Edit: Pretty much all the phase II studies I recall were recycling approved drugs like antivirals, immune suppressants, antinflammatories.

 

[Thomas Eugene Paris]

By the time the disease becomes clinically manifested, I'm not sure we can fully tease out its mechanism of action. The brain pretty much freaks the fuck out and everything goes wrong. Any approved and good prospective treatments are just trying to calm it the fuck down or replace the damage.

(I am increasingly inclined to believe that APP/PSEN mutations are a different disorder than APOE ones, but by the time the clinical signs show up, the brain is falling apart in ways that appear similar. As such, what we learn from one isn't helping treat the other.)

Also, as for the encephalitis thing, well... no one said all clinical trials were made equally. It was worth a shot, considering dementia is horrible, but the writing was on the wall that that was gonna happen.

Anyway, yeah it's an ethical minefield. I do think that if the alternatives are a slow and horrible death, we definitely need to be more willing to allow people to participate in clinical trials, including children and ID people. Obviously all the horrid shit that can and did happen is why we worry.

I think for disorders like Tay Sachs, just fucking do it.

Edit: Pretty much all the phase II studies I recall were recycling approved drugs like antivirals, immune suppressants, antinflammatories.

Yes, exactly. The same is true of basically any neurodegenerative disorder. Once the reactive gliosis starts, it becomes pretty difficult to figure out what came first, because the gliosis itself causes symptomatology. Most forms of chronic epilepsy are like this, and it's why it's so vital to get seizures under control as soon as they appear. Those epilepsy syndromes with intractable seizures have very bad outcomes, because once the brain starts trying to repair itself, everything is fucked.

Every seizure causes an injury on the cellular level, and the brain's way of "fixing" this is to grow a bunch of abnormal glial cells. Glia are the type of cells that give the brain its structure. So, when the neurons are killed off by the abnormal electrical activity which constitutes a seizure, a brain freaks the fuck out and tries to heal by slapping some glia in there. Unfortunately, glia don't have the same function as neurons, so they cannot be substituted like that. The resulting clump of glial cells is a bit like a scar on your skin after a cut has healed. It does the immediate and pressing job of fixing the structural damage, but it doesn't look or behave the same as healthy skin.

The glial scarring helps sequester the injured area, isolating the dead and dying cells from the healthy ones. This is good in the near term, because the blood brain barrier is pretty fucking important. However, the dense bands of abnormal glial cells physically prevent new, healthy axons from growing. More devastatingly, the cells can't regulate the reuptake of neurotransmitters they way normal cells do. For example, reactive gliosis increases release of glutamate, which is an excitotoxic neurotransmitter. In other words, too much glutamate floating around can actually cause more seizures. The brain's own attempt to fix itself actually causes more injury. The more areas of healthy brain that are replaced by glial scarring, the less normal function is retained. The more frequent a patient's seizures, the more abnormal glial the brain tries to grow. It becomes self-perpetuating and eventually the brain is so damaged that the patient dies. A brain might be able to recover from one or two seizures over the course of a lifetime, but if the cause cannot be isolated and controlled, you're in trouble, because your brain will destroy itself trying to help. There are some types of rare genetic epilepsies that are characterized by seizures that do not respond to medication or other intervention. Those are the ones that are usually fatal early in life.

 

[AnOminous]

A brain might be able to recover from one or two seizures over the course of a lifetime, but if the cause cannot be isolated and controlled, you're in trouble, because your brain will destroy itself trying to help.

Eventually you can end up with status epilepticus, either a really long seizure or a series of seizures all in a row without becoming conscious again. This isn't very common but odds are if this happens, you die or suffer serious brain damage, or at the very least seriously injure yourself if it's convulsive.

 

[GenociderSyo]

Intractable Epilepsy in this case Rasmussen's Disease shows what prolonged siezure activity can cause.

 

[Android raptor]

I don't know what the specific condition was but I had a friend with a seizure disorder who passed away from a seizure some years back. I didn't realize seizures could kill you before that

 

[Thomas Eugene Paris]

Eventually you can end up with status epilepticus, either a really long seizure or a series of seizures all in a row without becoming conscious again. This isn't very common but odds are if this happens, you die or suffer serious brain damage, or at the very least seriously injure yourself if it's convulsive.

You can also die from SUDEP, which stands for Sudden Unexplained Death in Epilepsy Patients. The medical community is uncertain why this happens, but it specifically excludes those patients who die from status epilepticus. Most SUDEP patients simply go to sleep and never wake up, but their bodies show no external signs of a seizure (bitten tongue, bruises, incontinence). It's very scary and sometimes seems to come out of nowhere, although there is evidence to suggest it's more common in people who do not have good seizure control, either because their epilepsy is resistant to medication or because they are non-compliant with treatment.

 

[TerrorSperg99]

This is where I differ from many of my fellow Christians. I think all life has value.But we shouldn’t allow needless suffering. These kids will be a burden on their parents and society. Additionally I imagine they will go through constant suffering.We’re better off letting them die at birth.As they would have before the invention of modern medicine

 

[Red Velvet Frappe]

I'll be assuming that he won't be waking up alot in the night because with the way she parades him around in front of crowds he will contract something due to his bubble boy syndrome.

I'd be upset too if I was in a bunch of pain. Seems like she needs to convince herself of the "I love this, it's such a miracle!" I feel bad for the daughter mostly, her needs will be overshadowed by her brother.

I also dont think parents celebrate moving up in clothes sizes, mostly because that's expensive and they have buy more crap that's gonna fit maybe a month or two it seems like

His head seems to be swelling more, and he's so much younger than Luna. Either way, I'm expecting the grifting to start.

Every pictures he's in the same exact position - hands clenched with his arms limp and his knees and legs bowed out into a a weird open splayed thing.

 

[Android raptor]

Every pic of that kid looks like its begging someone to put it out of its misery.

 

[Serialmom]

Every pic of that kid looks like its begging someone to put it out of its misery.

Yes it does. I HATE these daft twats.