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

[Android raptor]

Sophia Weaver had Rett Syndrome as well as the disorder effecting her face. Ran into a 2nd child in the series that had the same disorder sans the Rett Syndrome and they explained that children with it are born without any muscles, skin, or other portions of the jaw.

As for the lymphadema girl she had primary lymphadema.

Some of the kids form here such as christian buchanan were on the series as well.

Is that disorder or something related to it what ultimately caused her death? I seem to remember she was maybe a young teen at the oldest when she passed. Poor girl.

 

[GenociderSyo]

Is that disorder or something related to it what ultimately caused her death? I seem to remember she was maybe a young teen at the oldest when she passed. Poor girl.

The disorder that caused her facial deformity, Nager syndrome, also causes immune issues. I don't think they ever stated exactly what killed her.

 

[WinifredSanderson]

Stumbled on this tiktok account today: https://www.tiktok.com/@risewithraedyn?lang=en

Not really sure what to think, if the mom is legit then she had medical care throughout and the disabilities were due to traumatic birth while in the hospital. She has an early healthy son from being a teen mom that appears to be around 7-8.

This specifically was the video I came across: https://www.tiktok.com/@risewithrae...1&sender_device=pc&web_id=7130298664187463210 which seems like a crazy number of diagnoses but the baby seems much more aware, functional and capable than many we see here.

Anyone have any background on this one? Perhaps some med folks can chime in? Trying to determine if a sad tragedy of a birth accident with parents trying their best or something darker.

E: I am JUDGING the name Raedyn, though.

 

[copacetic91]

The disorder that caused her facial deformity, Nager syndrome, also causes immune issues. I don't think they ever stated exactly what killed her.

I didn’t think they ever specified what exactly was going on with Sophia aside from the Rett Syndrome. Her mom’s blog from 2019 cites an un-named disorder, along with “type 1 diabetes, a rare immune deficiency, and no B cells, a crucial part of our immune system, and more as we recently found out.”

Spoiler: From the blog

Six years ago, a scientist reached out to us and wanted to study Sophia's immune system and genes because he had discovered some of her differences in other patients. This new-found condition doesn't have a name yet, but there are ten known people with the same B cell deficiency and some of Sophia's differences. The other nine people had mild facial, hand, and feet differences, but Sophia's was the most prominent case. They linked having no B cells to causing differences in the face, hands, and feet as well as recurrent infections and other immune deficiency related symptoms. https://www.natalieweaver.com/what-is-sophia-s-diagnosis

 

[ShadowCass]

I mean yes. But in some cases like anencephaly, consciousness is not possible. So if you don't mind me asking, where do you stand on such cases?

Where a neonate will literally not have the actual brain structure to allow for consciousness. It's a hard one for sure and I'm convinced most of us who deal with that are the outliers. A plan and a system still has to allow for those.

Not to pl too much. But to be told at your 20 week foetal abnormality scan Mrs flidds u be cooking a spudlet? Do you choose to carry to term knowing it'll die soon after or what?

It's a hard thing to negotiate, and not a choice I would wish upon my worstest enemy.

And unfortunately in the US, it’s not even an option to choose not to carry it in some states. I had a good friend who was pregnant - found out in the second trimester that it had that same incompatible-with-life issue described above, due to lack of amniotic fluid. This was before RvW was overturned but her only option was to carry her child or get a mid/late-term abortion in another state, bc *her* health wasn’t at any elevated risk (other than, yanno, dying in childbirth). She did not wanna travel to another state so ended up carrying it to term and it was very tragic

 

[Android raptor]

I know abortions are increasingly rare after the 10 or so week mark, but I wonder if there's a slight spike in numbers around the 20 week mark specifically due to that being when a shitton of FUBAR fetal anomalies are diagnosed?

I remember a while back prolifers were screeching about an experiment where scalp tissue from fetuses aborted around 20 weeks were grafted onto rats. They were clutching pearls going on about how said fetuses totally would've survived as premies and shit even though I strongly suspect given the gestational age, that at least some of the donated fetuses were aborted/donated after getting devastating news at the 20 week scan.

 

[Crunchy Leaf]

I understand that parenting in general is difficult, and as I said, there is never, ever an excuse for hitting a defenseless child. I'm sorry that you have firsthand experience with this, too.

However, I think it's negligent to pretend that parenting a healthy, normal child is just as difficult as parenting one with significant disabilities. Yes, a parent's responsibility never truly ends, even when a healthy child reaches adulthood, but as the kid gets older, the nature of that responsibility evolves. Children get older and become more and more independent. During those really hard days, there's comfort in the knowledge that it won't last forever. There's a saying, "the days are long, but the years are short". Kids grow up and need less parenting, particularly less of the "hands-on" dirty work.

With a severely disabled child, though, there's no respite in sight. He will depend on a parent or caregiver for every need, forever. There is the constant expense and hassle of getting necessary equipment and supplies. There's the physical labor of lifting, moving, washing, dressing an adult-sized person who cannot assist at all. There are trips to specialist doctors, many of them. Sometimes, there are hospitalizations which cost thousands - hundreds of thousands - of dollars. Parents of special needs kids, whatever the level of their disability, will almost certainly watch their child suffer, whether it's watching their autist be left out on the playground, explaining to their son with DS that he will never be a dad, or watching their spud die of a respiratory infection after years of deteriorating from an undiagnosed genetic condition. The parent will never pack him up in his car and watch him drive off to start his independent life. The thankless drudgery of having a small infant never ends, but it may be even worse because he might not even recognize his parents or show affection. The milestones everyone else gets to take for granted come late if they come at all. The parent is exhausted, tired to the bone, but doesn't get a moment of rest unless the child dies or is institutionalized. This is even more true for parents of children with degenerative conditions, who are forced to watch their children become more dependent with age rather than less.

It's not an excuse to abuse your kid, but it has to be soul-crushing. Parenting a severely disabled child obviously has rewarding moments, but it's bullshit to pretend it's all smiling tards.

And in many cases a severely disabled child is harder to care for than a healthy infant, even aside from them being larger. Newborns don’t run around punching holes in your walls, they don’t try to bite off their own fingers, and while of course parents are concerned about SIDS they don’t have to watch the baby all night to make sure they don’t die. But there’s SPED conditions where at least one of those is true.

 

[buoyverificationfuel]

Rett syndrome is horrific, I can't imagine watching your child lose the skills they had gained. I have nothing but sympathy for Sophia and her family, and respect for the mother Natalie. The world would be a much better place if the parents in this thread were more like her.

 

[Thomas Eugene Paris]

Rett syndrome is horrific, I can't imagine watching your child lose the skills they had gained. I have nothing but sympathy for Sophia and her family, and respect for the mother Natalie. The world would be a much better place if the parents in this thread were more like her.
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I don't know about Natalie Weaver. First of all, I think she was disingenuous about Sophia's condition. Rett syndrome is not associated with facial clefting. I don't know if she did it deliberately or what, but she definitely made it seem like Rett syndrome was the primary cause of all Sophia's issues, and that is doing a massive disservice to other girls with RS.

Also, she was pretty fond of parading Sophia all over the Internet and then getting mad when people asked questions about her appearance. To me it almost seemed like she was baiting people into saying something so she could freak out. Obviously, cruel and mocking comments about a child who has no say in the matter aren't acceptable, but Natalie would become completely unhinged in an EDUCATE YOURSELF!!!! fashion in response to even well-intentioned questioning.

She actually reminds me a lot of Gwen Hartley.

Edited to say that there's a similar disorder called childhood disintegrative disorder, also known as Heller syndrome or childhood disintegrative psychosis. Patients develop mostly normally until early childhood, then begin to regress and lose all their skills. It's horrifying to watch. I have a young relative with it who is now nonverbal, nonambulatory, and in diapers after developing normally until he/she was preschool aged. The last intelligible speech he/she had was, "help me, I'm scared". He/she would wander around the house hitting his/her head and repeating "help me, I'm scared" in a monotone. Obviously, it was horribly distressing for the parents and other observers. He/she truly DID appear to be frightened; it wasn't just autistic scripting.

Here's another article about CDD.

 

[Nora Freeze]

There was a girl in my school system with Rett Syndrome. She was 2 years ahead of me, and somehow we had all our music and drama classes together.
She could not speak, but had her own aid that did her paperwork. She still had a sense of humor, too: one time for drama class we had to tell two truths & one lie about our personal lives, and one of her stories was she got invited on stage at a Jonas Brothers concert. That could have been a lie, but it told us she enjoyed her boy bands.

She passed away when I was in grade 11. The town built an entirely-new playground and dedicated it to her :]

 

[FFinfo]

He/she truly DID appear to be frightened; it wasn't just autistic scripting.

I remember people talking about CDD either earlier upthread or in a different one, and that makes sense: in the majority of cases, regression is preceded by a prolonged period of terror for the afflicted child.

 

[ZsaZsaBinks]

The gene for Rett Syndrome is located on the X chromosome. You may think as an X-chromosomal disorder it would be more common in boys, but RS is more common in girls. You see, RS is X-linked dominant, and X-linked dominant disorders happen can occur equally in both males and females. In males, however, they tend to be more severe. Some X-linked dominant disorders in males are so severe that they don't survive, so the only living patients are female. RS is one of these disorders.

 

[Thomas Eugene Paris]

Rett syndrome is caused by a mutation in a gene called MECP2, which is located on the long (q) arm of the X chromosome and encodes a protein called methyl CpG binding protein 2 (MeCP2). There are more than 50 disease-causing MECP2 mutations described in the literature. Rett syndrome is the most common manifestation, but there are other disorders that actually affect primarily boys. MECP2 disorders are actually considered a spectrum, with Rett syndrome at the milder end.

The most severe MECP2 related disorder, MECP2 related severe neonatal encephalopathy affects boys almost exclusively and causes severe encephalopathy, microcephaly, and seizures. Affected boys have severe to profound intellectual disability and usually die during infancy due to respiratory failure.

Mutation in MECP2 causes PPM-X syndrome, also known as X-linked syndromic intellectual disability syndrome 13, which is characterized by mild to moderate intellectual disability, mental health problems (particularly bipolar disorder), psychosis, abnormally large testicles, muscle spasticity, and tremors.

So, while Rett syndrome affects females, there are documented cases of male patients with mutations in the same causative gene.

 

[ShadowCass]

Even then, like 95% of Pubmed is junk, too.

Genuine question- are the articles in PubMed peer reviewed?

I’d really hate to hear they are not peer-reviewed… not that peer review is the end all, be all, but it usually helps. I have found the PubMed site useful when I’m trying to find articles/opinions backed by facts/research. Am I too trusting?

Late but in 2014 a cyclops baby was born in India. Like all cyclops babies, he didn’t live long, dying at only 10 hours old. When he was alive, the doctors filmed him. ISIS then found the video of him and posted it to their website, claiming that he was born in Israel and would grow up to be the Dajjal (which is the Antichrist in Islamic theology). According to Islamic theology, however, the Dajjal is a normal faced man who is missing an eye and not a cyclops. But that didn’t stop ISIS from not doing research and using the deformed baby’s image to get more recruits.

I am perplexed - the complete and utter lack of a nose was far more jarring to me than the single eye. I suppose there’s no headline options for a missing nose as dramatic as screaming about the “anti-Christ cyclops.”

ETC accidental double post.

 

[WinifredSanderson]

I am perplexed - the complete and utter lack of a nose was far more jarring to me than the single eye. I suppose there’s no headline options for a missing nose as dramatic as screaming about the “anti-Christ cyclops.”

I, too, find the lack of noses very uncanny, whether genetic or bad plastic surgery. Squicks me out fully.

 

[Thomas Eugene Paris]

Genuine question- are the articles in PubMed peer reviewed?

I’d really hate to hear they are not peer-reviewed… not that peer review is the end all, be all, but it usually helps. I have found the PubMed site useful when I’m trying to find articles/opinions backed by facts/research. Am I too trusting?

I have a lot to say about this. I'm working on a post, but in short, you are probably not too trusting. PubMed is a better starting point than most of the Internet if you know a bit about how to vet a journal.

Post forthcoming at some point soon, I'm simultaneously trying to do all the Sunday evening shit so it may be a couple hours.

 

[MirnaMinkoff]

I know abortions are increasingly rare after the 10 or so week mark, but I wonder if there's a slight spike in numbers around the 20 week mark specifically due to that being when a shitton of FUBAR fetal anomalies are diagnosed?

I remember a while back prolifers were screeching about an experiment where scalp tissue from fetuses aborted around 20 weeks were grafted onto rats. They were clutching pearls going on about how said fetuses totally would've survived as premies and shit even though I strongly suspect given the gestational age, that at least some of the donated fetuses were aborted/donated after getting devastating news at the 20 week scan.

Yes, but it’s a lot harder to get an abortion past 20 weeks anywhere in the USA, even before Roe v Wade was over turned. Many forms of microcephaly aren’t detected till the critical anatomy scan at 18 weeks. They do a critical scan at 18 weeks because the fetus is big enough to detect certain defects. The downside is they detect them, but it can take several more critical weeks of growth to confirm the issue and it’s severity leaving women with very few options to terminate by that point.

The very sad website dedicated to terminating “wanted pregnancies” details how incredibly difficult and expensive it was for women who only discovered NCWL defects after the anatomy scan. Many had to use retirement funds or borrow money from family. It’s not just finding and doctor abd traveling long distances it’s then $10-20k on top of that.

 

[booklover]

Rett syndrome is caused by a mutation in a gene called MECP2, which is located on the long (q) arm of the X chromosome and encodes a protein called methyl CpG binding protein 2 (MeCP2). There are more than 50 disease-causing MECP2 mutations described in the literature. Rett syndrome is the most common manifestation, but there are other disorders that actually affect primarily boys. MECP2 disorders are actually considered a spectrum, with Rett syndrome at the milder end.

The most severe MECP2 related disorder, MECP2 related severe neonatal encephalopathy affects boys almost exclusively and causes severe encephalopathy, microcephaly, and seizures. Affected boys have severe to profound intellectual disability and usually die during infancy due to respiratory failure.

Mutation in MECP2 causes PPM-X syndrome, also known as X-linked syndromic intellectual disability syndrome 13, which is characterized by mild to moderate intellectual disability, mental health problems (particularly bipolar disorder), psychosis, abnormally large testicles, muscle spasticity, and tremors.

So, while Rett syndrome affects females, there are documented cases of male patients with mutations in the same causative gene.

Rett syndrome is in the news right now, because reporter Richard Engel's son Henry had it, and died a few days ago at the age of 6.

https://www.nbcnews.com/health/kids-health/nbc-news-richard-engel-says-6-year-old-son-henry-died-rcna43734

RIP, Henry, and many hugs to this family.

I've mentioned before in this thread that I knew a woman (she has since died) whose son probably had CDD. He appeared normal until he was 2 1/2, almost to the day, and then totally regressed into himself. (This was in the late 1940s, so NOBODY had a clue what was going on,) At the time that I knew her, in the 1990s, her son was institutionalized in a distant state, and she didn't visit or keep in touch - it was just too painful for her - but his physician father, who lived in the area and is now deceased himself, did, and kept her updated on how he was doing. (She emphasized more than once that this was NOT why they were divorced, and in fact it probably would have happened sooner had they not had a disabled child.) He had a child with his second wife who was a textbook case of Asperger's syndrome, highly intelligent but would probably never marry or take care of himself.

 

[A Detachable Penis]

The reproducibility crisis in science is worst in psychology and social sciences. Too small sample sizes, poor methodologies, etc.

Not to say it doesn't happen in hard sciences. The whole autism caused by vaccines had fabricated data. Every field has an issue with small sample sizes so this should be the first thing you ever check.

I can only really speak to genomics/proteomics.

Any genome-wide assay should be extremely cautious about its conclusions. For example, you take a population of schizophrenics and a population of normal people. Then, you sequence the DNA of all of them and see what's different. Any statistically signficant differences can be inferred to MAYBE cause the schizophrenia. The issue is that this method gives you so, so many false positives and investigating each one has been a massive waste of time for scientists.

 

[JackDonaghysSecretLover]

I don't know about Natalie Weaver. First of all, I think she was disingenuous about Sophia's condition. Rett syndrome is not associated with facial clefting. I don't know if she did it deliberately or what, but she definitely made it seem like Rett syndrome was the primary cause of all Sophia's issues, and that is doing a massive disservice to other girls with RS.

Also, she was pretty fond of parading Sophia all over the Internet and then getting mad when people asked questions about her appearance. To me it almost seemed like she was baiting people into saying something so she could freak out. Obviously, cruel and mocking comments about a child who has no say in the matter aren't acceptable, but Natalie would become completely unhinged in an EDUCATE YOURSELF!!!! fashion in response to even well-intentioned questioning.

She actually reminds me a lot of Gwen Hartley.

Edited to say that there's a similar disorder called childhood disintegrative disorder, also known as Heller syndrome or childhood disintegrative psychosis. Patients develop mostly normally until early childhood, then begin to regress and lose all their skills. It's horrifying to watch. I have a young relative with it who is now nonverbal, nonambulatory, and in diapers after developing normally until he/she was preschool aged. The last intelligible speech he/she had was, "help me, I'm scared". He/she would wander around the house hitting his/her head and repeating "help me, I'm scared" in a monotone. Obviously, it was horribly distressing for the parents and other observers. He/she truly DID appear to be frightened; it wasn't just autistic scripting.

Here's another article about CDD.

That story about the child with CCD is legitimately one of the most horrifying things I've read on the farms, and I'm very active in the Luna thread. Jesus Christ.

I agree about Natalie Weaver. Not to sound cruel, but her daughter had to be one of the most grotesque children I'd ever had the misfortune of seeing. A human jump scare. Natalie forcing her daughter on the public and then getting mad that people had unkind things to say bordered on delusional. This is the internet! I never consented to look at her deformed daughter, and I doubt her daughter ever consented to being paraded around like a freak for... attention? Pity? Ass pats? Sadism? I don't even know. I feel mean saying all this but give me a break.

But what bothered me worse were the people who would stroke her ego when she'd complain about the meanies online. "Sophia is beautiful" I saw one woman I know (a cow in her own right) tweet. Like, it's one thing not to be mean, it's another to actively lie. It's just bizarre behavior.

I can't say what I would do if my child were deformed like that, but I do know I would be kind enough to protect them from the cruelty of the world and not force them into a role where I'm making an example of them for attention.

Ugh rate me, I didn't mean to rant.