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

[Lesbian Grandma]

Wasn't there one woman with the condition who donated her skeleton to the Mutter Museum after she passed, with the condition they displayed it with her jewelry collection?

They have two donated skeletons of people who had FOP, and yes, Carol's jewelry collection is displayed with her, but there doesn't seem to be many pictures of it.
Edited cause I'm dumb and didn't put the image in LOL

 

[Mayhem]

They have two donated skeletons of people who had FOP, and yes, Carol's jewelry collection is displayed with her, but there doesn't seem to be many pictures of it.View attachment 5659025
Edited cause I'm dumb and didn't put the image in LOL

I’ve seen Harry and Carol. I think it’s very likely, with the new pronoun-pin folx running the place, that Harry and Carol will be put in storage soon.

Carol stipulated in her will that she wanted her body on display beside Harry’s. She said seeing his skeleton meant a lot to her, as someone else with the same condition, and there are a few pieces of her jewelry on display along with a little picture book about her life, including her visits to the Mutter.

 

[booklover]

Has anyone seen/posted about this kid? It's a fucked up situation, and the worst part is based on what i've seen on this thread w cognitive brain deformities n behavior, the poor kid is probably barely there and yet they're still giving the mother hope. (2nd video is mostly a recap but has some new info near the end)

I haven't seen any updates on him since he was sent to India for craniofacial surgery. The update I did see said that the mother mentioned that the biodad wanted to come back, because of the monetary donations she was getting, so it sounds like they were better off without him overall.

 

[TismFarmer]

I am pretty sure turning tissue into bone is some necromancy and I need to consult the superstitions thread on how to proceed. Jesus fucking Christ, indeed.

For Powerlevel reasons, I have done quite a lot of research around living with this disorder and it's even more horrifying than you think!
Sufferers have to decide fairly early on how they want to 'freeze', with body and legs straight in bed used to be the norm, but now they suggest a sitting position as they can sit in a wheelchair and have a better quality of life. Also the arm position is, important, if the arm/hand freezes in a 'useful' position it can still be used to hold objects even after it's frozen. Dressing is also a consideration, their arms cannot be removed like a mannequin so the frozen position of the arms is important for dressing ability. When there is damage to a body part, it feels hot to the touch and they know that part will soon freeze. Imagine knowing in advance that whatever position you put your arms in today will be how they are for the rest of your life...

 

[Android raptor]

What is the typical lifespan for people with the FOP? It sounds like Carol tried to have the best life she could for her circumstances.

Absolute nightmare condition

 

[AnOminous]

What is the typical lifespan for people with the FOP? It sounds like Carol tried to have the best life she could for her circumstances.

Absolute nightmare condition

It's currently about 55 though it used to be a lot worse. Says the cause of death is often "thoracic insufficiency syndrome" or pneumonia, thoracic insufficiency being the muscles attached to your ribcage can't make you breathe any more so you suffocate. Sounds godawful.

 

[booklover]

I remember seeing a Discovery Channel show about FOP, which is actually where I first heard of it. They mentioned Harry's skeleton, and that his sister said it was a comfort to see that because it meant he wasn't suffering any more.

There are also gradations. There was one person who'd had an arm amputated because they thought she had bone cancer, and TBH, maybe she did, but it hadn't shown up anywhere else in her body as of when the show appeared.

 

[booklover]

AND ineligible for fostering, or adoption.

Anyway, I have more or less followed the Van Houten sextuplets of Michigan since they were born naturally over a span of 10 days in 2004. (That was not a typo; they were also born between 23 and 25 weeks' gestation, and most of them had varying degrees of disability.) The most severely disabled one, who indeed could have been described as a potato, died last month at age 17.

Their biological father died suddenly in 2014 of a heart attack after setting up a trampoline in their yard (this seems to run in his family) and their mother remarried, to a local chiropractor, not long afterwards. The really horrifying thing about this is that he has 5 daughters from his first marriage that he is not allowed to see or contact (see footnote) and they are not mentioned in the boy's obituary or his practice's website! Gee whiz, what could possibly go wrong with THAT?!?!?!??!??

Footnote: I saw on social media that he was allowed to attend his oldest daughter's college graduation, but he was told which entrance to use and where to sit, and that he was not to approach any of them if he saw them, nor were they to do this with him. An adult child under what sounds like a permanent no-contact order just doesn't sound good to me, to say the least.

The 5 survivors of the Van Houten sextuplets turned 20 earlier this month, and in looking for updates on social media, it appears that the mother and stepfather have separated.

I stumbled across Eva Love on Instagram a few weeks ago. Such an adorable looking kid. Poor, poor girl. The long term prognosis looks pretty dire.

I can imagine that the parents, as fundies, must get immense comfort from the solid, unshakeable belief that their God is going to fully heal their child. It must be the only reason they can get out of bed in the morning. But at the same time... jeez, it must be so hard for medical professionals to even talk to them... make sure they understand what is being said to them. To understand what kind of existence their daughter is going to have now.

It’s like their faith is expressed as denial bordering on complete stupidity.

I also just looked up Eva Sherbondy, the little girl who was left severely brain-damaged after a golf cart accident.

The latest update is that she has undergone a tracheostomy and put on a ventilator, just within the past few months. She's also starting to go through puberty and while she does appear alert, she can't communicate (locked-in syndrome, perhaps?).

 

[877-CASH-now]

Between FOP and locked in syndrome, this thread has officially become the saddest thread. Can we get some Luna level nonsense for some levity?

 

[Bad Egg]

I don't really have anything substantial to add to the thread because my friend sent me this and I rushed over here to share it with everyone

 

[Thomas Eugene Paris]

She's also starting to go through puberty and while she does appear alert, she can't communicate (locked-in syndrome, perhaps?).

I'm pretty sure that Eva Sherbondy is totally gorked. She appears awake and alert, but not really aware. She might have more consciousness than Luna, for example, but her brain injury was very severe. I don't think she's "locked in", and I would be surprised if she were still cognitively present enough to use an augmentative communication device. She will never get better than she is right now.

Her parents, particularly her father, really rub me the wrong way and their decision to trach and vent her has done nothing to improve my opinion of them. I'm sure they are still claiming that she has an excellent quality of life but even a brief perusal of her dad's social media bullshit makes it pretty clear that she's not exactly thriving and happy.

 

[obsdj]

Has anyone ever seen updates on Tinslee Lewis since the hospital released her instead of letting her die peacefully? I've never been able to find any updates of her actually being alive after April 2022, when her mom bragged that she was home. The only articles I can find are the ones from that month saying she was released, and pro-life blogs continuing to crow about it ever since.

 

[KayCeeM]

Totally forgot about this car crash of a human until it popped in my feed. He's 9 years old, hasn't lived a single day of it but PRAISE THE LAWWWD he's here, bringing horror to every moment with his giant fucking contracture feet, rolling eyeballs and lolling tongue.

 

[(The REAL) Jack Torrance]

Totally forgot about this car crash of a human until it popped in my feed. Hes 9 years old, hasnt lived a single day of it but PRAISE THE LAWWWD hes here, bringing horror to every moment with his giant fucking contracture feet, rolling eyeballs and lolling tongue. View attachment 5719173

FYI your pfp is visible at bottom of post. May want to crop and repost

 

[KayCeeM]

FYI your pfp is visible at bottom of post. May want to crop and repost

Cheers my dude

 

[Thomas Eugene Paris]

Totally forgot about this car crash of a human until it popped in my feed. He's 9 years old, hasn't lived a single day of it but PRAISE THE LAWWWD he's here, bringing horror to every moment with his giant fucking contracture feet, rolling eyeballs and lolling tongue. View attachment 5719173

The child is not the lolcow here. He can't help the way he was born, and he's certainly known more suffering than any human being deserves. He's a child with a lethal genetic disorder affecting every cell in his body. Obviously, he looks different, and speaking only for myself, I think it is monumentally shitty of you to mock him for it. He didn't ask for this to be his life. If he were capable of higher level thought, I'm sure he'd prefer to be a normal-looking child with a full life ahead of him.

Spoiler

He has rhizomelic chondrodysplasia punctata (RCDP), an extremely rare and devastating autosomal recessive disorder arising most frequently from a mutation in a gene called PEX7, which encodes a protein called peroxisomal biogenesis factor 7. The mutation causes impaired function of peroxisomes, which are organelles, or parts of a cell, that have a critical role in the metabolism of fatty acids. Peroxisomes are also where myelination begins, and most peroxisomal disorders, including RCDP, cause severe abnormalities of the central nervous system.

Signs of RCDP include dwarfism with severe shortening of the femora and humeri (rhizomelia), dysmorphic facial features, congenital cataract, spasticity, joint contractures, and profound mental retardation. On x-ray, cartilage has a distinctive stippled appearance (the "chondrodysplasia punctata" part of the disorder's name), caused by abnormal calcification of the bones during early fetal development. Most affected individuals die in infancy or early childhood.

I'm not going to tell you how or what to post (much), but this kind of low effort bullshit isn't witty or interesting and contributes nothing to the thread. Sorry that the appearance of a dying child disturbs you so much, I guess.

 

[Teghern]

The child is not the lolcow here

Children are innocent and also sacred, and the state these people permit their offspring to exist in reflects directly on the true subject which are of course the parents.
I agree it is poor taste to personally attack the potatoes but without shitting on the crop how can you critique the grower? None of it is his fault of course but you can't properly say anything about the true subject in question if you're self correcting your thoughts to protect your own decorum/the (purely hypothetical) feelings of a could-have-been-human?

 

[Thomas Eugene Paris]

Children are innocent and also sacred, and the state these people permit their offspring to exist in reflects directly on the true subject which are of course the parents.
I agree it is poor taste to personally attack the potatoes but without shitting on the crop how can you critique the grower? None of it is his fault of course but you can't properly say anything about the true subject in question if you're self correcting your thoughts to protect your own decorum/the (purely hypothetical) feelings of a could-have-been-human?

Spoiler

The kid is just an extraordinary accident of the universe, like all of us. He has no idea that he is a topic of discussion here, and he wouldn't be able to comprehend it if he did. That doesn't matter. It's lame and gay to make fun of him because it takes zero effort or higher-level thought to do so. The same type of "jokes" could be made about literally anyone; it's meaningless, pointless drivel. We know that the child is unusual looking. Everyone who has ever seen him has noticed all of the things @KayCeeM so sagely brought to our attention, and then some. Multiple very obvious and severe physical malformations like that are immediately noticeable by anyone with at least one functional eyeball, and pointing them out merely for the sake of making sure that everyone knows you saw them is the epitome of inanity. It's the lowest possible thing to laugh about. If you're going to make fun of people, you need to understand them first, or it's just monkey gestures and turd flinging. Alas, some people are so stupid that they're incapable of understanding anyone else, including a profoundly disabled child who probably has little, if any, conscious thought. Anyone who understands anything can see that this child isn't an attention seeking eccentric like every other subject of discussion here.

It's the Kiwi Farms. Suffice it to say there's no "protecting your own decorum" involved.

 

[Teghern]

Spoiler

The kid is just an extraordinary accident of the universe, like all of us. He has no idea that he is a topic of discussion here, and he wouldn't be able to comprehend it if he did. That doesn't matter. It's lame and gay to make fun of him because it takes zero effort or higher-level thought to do so. The same type of "jokes" could be made about literally anyone; it's meaningless, pointless drivel. We know that the child is unusual looking. Everyone who has ever seen him has noticed all of the things @KayCeeM so sagely brought to our attention, and then some. Multiple very obvious and severe physical malformations like that are immediately noticeable by anyone with at least one functional eyeball, and pointing them out merely for the sake of making sure that everyone knows you saw them is the epitome of inanity. It's the lowest possible thing to laugh about. If you're going to make fun of people, you need to understand them first, or it's just monkey gestures and turd flinging. Alas, some people are so stupid that they're incapable of understanding anyone else, including a profoundly disabled child who probably has little, if any, conscious thought. Anyone who understands anything can see that this child isn't an attention seeking eccentric like every other subject of discussion here.

Spoiler: predestination

If anything we're laughing at god IMO, I don't see misbegotten vessels like this as worthy of not mocking but I appreciate it isn't a nice thing, certainly immoral but like most I'm a self-admitted bad person and don't see anything wrong with it. just look away lol, the thread we're in is literally called tard baby afterall.

It's the Kiwi Farms. Suffice it to say there's no "protecting your own decorum" involved.

Not having any standards can still be a standard in and of itself.

 

[Catmannjew]

Not having any standards can still be a standard in and of itself.

Lurk more and stop being a sped, and you and @KayCeeM then you can debate decorum with other users.