This is what childhood dementia does
ฝัง
- เผยแพร่เมื่อ 7 ส.ค. 2021
- Angelina's story gives devastating insight into the impact of childhood dementia.
Learn more, get involved and donate here: www.childhooddementia.org
If your family is impacted by childhood dementia, we have information for you here:
www.childhooddementia.org/for...
If you are a health professional and would like to learn more about childhood dementia, please visit:
www.childhooddementia.org/pro...
If you are a researcher and would like to learn more, get the latest information and collaborate with other researchers, please visit: www.childhooddementia.org/joi...
You can learn more about childhood dementia here: www.childhooddementia.org/wha...
And by watching our 3 minute explainer: • What is Childhood Deme...
WHAT CAUSES CHILDHOOD DEMENTIA? Childhood dementia is caused by 100+ rare genetic disorders. Sadly, most children with dementia die before reaching adulthood. Half die before their 10th birthdays. Childhood dementia is progressive. The brain is damaged more and more. Children progressively lose skills they’ve already developed such as the ability to write, read, learn, talk, walk and play. Their brains also lose the ability to keep the body functioning properly and, eventually, to keep the body alive.
IS THIS NEW? No. Sadly, the genetic conditions that cause dementia in children are not new. They are each individually rare, however, and have traditionally been researched and responded to individually and in silos. Bringing these disorders together into a collective group to spark awareness, action and solutions is new. Childhood Dementia Initiative launched in 2020 to do this.
WHAT DOES CHILDHOOD DEMENTIA INITIATIVE DO? We can find solutions for kids like Angelina. Think of childhood dementia like cancer before action and research started to improve quality of life, survival and prevention. We're working to:
1. Transform research. This includes driving a shift away from researching just one disorder at a time to researching multiple disorders concurrently and sharing expensive infrastructure between research projects to speed up progress);
2. Improve care and quality of life for children with dementia. This includes amplifying family voices about what they need and engaging with health providers and professionals to build understanding and improved support for families who report it's difficult to get the care they really need;
3. Advocate and build awareness so that childhood dementia becomes a health priority. The fact that you're watching this video is a step forward. Nothing will change if no one knows about childhood dementia.
Join us at:
/ childhooddementiainiti...
/ childhood-dementia-ini...
/ childhooddementia
/ child_dementia
Apologies if we haven't managed to answer your question. Below are answers to some common ones.
WHAT CAUSES CHILDHOOD DEMENTIA? Childhood dementia is caused by 100+ rare neurodegenerative genetic disorders. Sadly, half of all children with dementia die by the age of 10 and most don't reach 18 years of age. Around 1 in every 2,900 babies are born with a childhood dementia condition. You can see a list of these conditions here: www.childhooddementia.org/childhood-dementia-disorders
DO VACCINES, TOXINS OR DIET CAUSE THIS?
No. Children are born with these inherited genetic childhood dementia conditions. See above and below for more info.
HOW DOES CHILDHOOD DEMENTIA KILL? Childhood dementia is progressive. So the brain is damaged more and more. Children progressively lose skills they’ve already developed such as the ability to write, read, learn, talk, walk and play. Their brains also lose the ability to keep the body functioning properly and, eventually, to keep the body alive.
IS THIS NEW? No. Sadly, the genetic conditions that cause dementia in children are not new. They are each individually rare, however, and have traditionally been researched and responded to individually and in silos. Dementia in childhood has been known for more than 100 years. What is new is bringing these disorders together into a collective group to spark action and solutions. Childhood Dementia Initiative launched in 2020 to do this.
WHAT DOES CHILDHOOD DEMENTIA INITIATIVE DO?
The technologies and brains to find solutions for kids like Angelina exist. Think of childhood dementia like cancer before action and research started to impact quality of life, survival and prevention. We're working to:
1. Transform research (this includes driving a shift away from researching just one disorder at a time to researching multiple disorders concurrently and sharing expensive infrastructure between research projects to speed up progress);
2. Improve care and quality of life for children with dementia (this includes amplifying family voices about what they need and engaging with health providers and professionals to build understanding and improved support for families);
3. Advocate and build awareness so that childhood dementia becomes a health priority.
The fact that you're watching this video is a step forward. Nothing will change if no one knows about childhood dementia.
You can find more info on getting involved here: www.childhooddementia.org and also under the video description.
You can learn more about childhood dementia by watching our animation: th-cam.com/video/E44qTywdS_I/w-d-xo.html or visiting our website: www.childhooddementia.org/what-is-childhood-dementia
"Sadly, 75% of children with dementia have a life expectancy of 18 or less" Now I need to google why that is.
My heart goes out to you. Please investigate Dr. Royal Rife, there could be potential to help her through rife therapy. Also, consider looking into the work of Ken D. Berry MD and carnivore diet and it's affects on dementia if there is any chance it could help her. And Vernon Coleman MD, the B-12 deficiency link to dementia. I'm not saying any of these things will cure her but if they could help or improve her condition, it's worth investigating and considering. I will pray for her too.
Very sorry for my ignorance on childhood dementia. Many Alzheimer's cases improve drastically during MCT (medium-chain triglyceride) supplementation, but IDK how that maps to this.
Ahh, I follow a few families on Tictok that kids have Sanfilippo . Such sad disease.
Until now, I didn't even know it existed and I Hope Angelina is doing well with all things concerned. Having 4 boys, 3 of which have some kind of illness like ADHD or Anxiety, maybe Autism. We're still working that out as yet but my heart goes out to Angelina, Family and Friends. I couldn't even imagine the trauma and the anxiety the family us going through ❤️🙏🇦🇺
I never knew that children could get dementia too...at her age this is just heartbreaking..my heart goes out to this beautiful girl and her family
Think of the literal millions of genes in the human body. Of the trillions of cells packed with DNA- a little instruction manual for how every protein in the body is folded to create every structure to care out and coordinate every complex function that sustains our lives. When you realize how many millions of ways our body can malfunction at any moment its a miracle we’re ever healthy at all, and its easier to understand how fragile health is and why many are born and die without ever knowing even knowing full health.
Any disease that can happen to an adult can happen to a child and visa versa, its just most have more “common” age ranges. We rarely know why someone’s disease process develops outside the statistical norm....
I feel like as a rule of nature though we should all get a guaranteed first 20 years of perfect health (in that perfect world that doesn’t exist). Life is hard enough, we should at least get healthy childhoods to grow as mentally and physically strong to cope with everything else life will throw at us. Childhood illnesses are especially cruel. I guess the only “positive” difference in being seriously ill as a child vs ill as an adult is children typically get a lot of attention and care paid to their feelings and mental health, while adults often lose most of their social life and spend a lot of time lonely and forgotten. Also children don’t have to feel guilty or like burdens because they are CHILDREN- healthy or sick its expected that others are meant to take care of you, but adults are expected to care for themselves, to work, contribute in some way, and when they can’t the depression from that feeling of being a useless burden can be crushing.
I’m not saying kids have it “easier”, just some things are different... things most healthy people never consider about being seriously ill as a child or adult.
@@juliejanesmith57 Well said. 👍
@@juliejanesmith57 damn bro, you wanna type my essay?
figured I was the only one that had no clue about this striking one so young...
@@Zulantie It wasn't even that long really
The fact that many of us are finding out about childhood dementia because of randomly coming across this TH-cam clip is a real problem .
Yes, we agree.
I'm in full agreement with you here! I must have heard that it was possible because I wasn't shocked by the title, but the severity of it really drove the message home!!!😨
Still better than to find out about it from your own experience…
Yeah, I didn't know until now. I knew of other neurological conditions could affect children like Huntington's, but never this. My grandma passed recently with Dementia. Hits different when you see it in a child though. Heartbreaking. My circle of people will know about this after I share it. Hopefully technological progress and AI can help with developing treatments for these rarer diseases in the coming years.
I've known about it multiple times, but I keep forgetting about it.
That look that she gave when answering the question, it was so distant like she was on another planet, like she didn't even knew where she was at that moment, heartbreaking.
Can't agree more. Same look my grandma has... but she's 83. Poor child.
RIGHT. Her eyes looked so soulless, I feel horrible
She was barely there
@@christophermccoy151 Same here, but my grandma is 88 :/
My grandma is in a box.
(In all seriousness hers started just before she died of unrelated causes)
She looked like someone taking antidepressant pills.
"I fear I might die" is just not something you want to hear from a person, especially a kid.
Truly heartbreaking
Yes but everyone dies. It is not taboo.
I don't think he meant it as in it being taboo, but as in how horrible it is for someone to feel like they are dying.
A CHILD dieing.@@zoep.2891
@@user-sp4gy7ko5lBut so young, they have a whole life ahead of them, It's just sad, honestly.
@@user-sp4gy7ko5lnot verybody dies when they are 18..
Didn’t know this disease existed until ten seconds ago. This is horrific and clearly needs more publicity!
I didnt know about it and yeah needs more publicity
Me neither.... My god thats horrific, obviously its terrible for any pertain at any age.... But we're almost programmed to accept it can come with old age... But this.... Just awful
Everywhere at the end of time
It has been diagnosed as social disorders, Autism, Huntington's, TBI. Parkinson's, Creutzfeltd-Jakob, retardation. It's a very long list. Getting a diagnosis for adults as Dementia is not always accurate either. Very long journey.
It's also known as Alzheimers. Bad enough when it affects someone who is over 75 but a budding life of 16? Tragic.
It breaks my heart to see how lively she was before the condition started, and how she just seemed...... lost..... afterwards....
I agree gellert
We are looking at her in one tiny clip for five seconds. How can that really tell us anything about her? I wouldn't want anyone judging my condition based on something so small.
@@denisenicole8271 it is very hard to watch this daily. Families just like Angelina's are heartbroken everyday
@@denisenicole8271 Exactly
Sad :(
She just turned 20. She’s a trooper. Breaks my heart because she was normal at 14. Completely normal
She’s still alive?
This is entirely a mental disorder. Her body will obviously have slowed reaction however it’s not likely to deteriorate her physical body. Just entirely mental, which honestly is much worse and its very sad. She is so beautiful
@@nicolasr7706 Sadly, that's not the case. All children with dementia die, around half before the age of 10. Childhood dementia is progressive. The brain is damaged more and more. So in addition to children progressively losing skills they’ve already developed such as the ability to learn, talk, walk and play, their brains also lose the ability to keep the body functioning properly and, eventually, to keep the body alive. There is a range of other symptoms kids can experience that differ across disorders and are different for each child. These can include seizures, severely disturbed sleep and loss of vision or hearing.
@@childhooddementiainitiativ4040 to piggyback as the disease progresses it can become harder to predict which bodily functions will deteriorate or completely stop. Usually things like bladder control and swallowing might go first, but it's been known for breathing and other basic unconscious functions to deteriorate.
@@nicolasr7706 Dementia is often the symptom of neurological degeneration
If your brain which controls your organs, becomes smaller, so to does your body's ability to regulate itself get lesser. Quite often the death from Dementias is a Co-morbidity with Organ Failure and internal bleeding or stroke.
My wife works with children with disabilities. One of them is a girl with dementia. My wife sometimes updates me on how she’s doing and it genuinely makes me cry. She’s 14 and can barely talk now. We have two girls and it makes me hug them extra tight when I get home from work every day.
Please send our regards to your wife. And thanks for your awareness and care. We won’t stop working until kids have the treatments and support they need.
my heart broke when i read “there is no cure for angelina”.. i never knew childhood dementia was a thing :(
I am a psychologist and I find it hard to believe that there is no cure for Angelina. Who said that there is no cure? Why not?
@@GoldenEagle469 I thought dementia was irreversible regardless 🤔
@@GoldenEagle469 if your a psychologist you would know there is no cure for Dementia, no matter who has it or there age .
@@GoldenEagle469 They should say they just don't know the cure yet or if they ever would know it. Something caused it, something can cure it. Every reputable scientist doesn't say that there is no answer if they just don't know the answer. They test.
How do they diagnose it?
"And I feel like I might die". That phrase broke my heart. All my prayers for this girl.
😥🙏🏾🙏🏾🙏🏾
nothing hurts more than the fact that you know that you'd die eventually when you genuinely wanted to live
Prayers? They help. Poor girl. 😞
we will all die . time goes by very quickly. last 50 years was like last night
I bet they don't @@malcpaul996
I always thought that my worst fear was developing dementia and forgetting my child. Now it strikes me as a possibility that my child could too. New fear unlocked.
i remember when a friend showed me and another friend this. and both of them laughed. i got so pissed at them and told them that she struggles with child dementia. and that whole call went silent and they soon realized it was a actual thing. they watched it again and one of them cried for 20 minutes.
i don't understand how they watched this video and thought it was just a joke???
My best friend died of Alzheimer when he was 33 years old.
It was difficult to see him go like that.
I wish you all the best.
Sorry to hear about your friend, @357Maxim Very sad.
I actually didn't realize anyone that young could get Alzheimer's disease.
_"My best friend died of Alzheimer when he was 33 years old."_ What is even harder is watching a parent have a race toward total dementia over the span of 6 years. My mom started calling me by my older brothers name 6 years ago. I would remind her of my name and she would call me that for the rest of the day. About 2 years later, I would remind my mom of my name and she would call me that once and then go back to calling me my older brothers name. Another 2 years later she would just call me and my older brother "Beau". My older brother and I were never at her home at the same time, so she didn't have to call us "Beau 1" and "Beau 2". 2022 I would ring the door bell of her front door and she would come to the door asking me what I wanted when I would come over to mow her grass or do the dishes or help out with other small things around the house. I was over her house 2 days before she gave up and all she would talk about is her childhood. She passed on March 10th 2023. It was hard to watch the decline. She was 85.
@@nathanwoodruff9422 I'm sorry for what you went through but "What is even harder" seems a little uncalled for no? This isn't a competition and saying their suffering is less than yours is pretty self centered and rude. Let's just all agree it sucks just as much for ALL that experience it (Be it to themselves or a loved one).
agreed. very sad stories regardless though@@buttnugget2900
For people wondering, these children are not affected by the disorders older people get (alzheimers, vascular dementia etc) but rather by genetic disorders that basically don't allow for proteins to disperse, as they accumulate usually in the nervous tissues there is a breakdown of function which include the loss of neuro-cognitive capabilities, and that looks very similar to a patient developing what we normally call dementia . Unfortunately all these disorders are extremely rare and the only possible cure is gene therapy, which currently is in the first stages of developing. Hopefully in a few years we will be able to do something about all genetic disorders that are linked to a specific gene that can be 'replaced' through gene therapy.
Yes! I’m getting a doctorate in genetics so I can utilize CRISPR (assuming that’s the gene editing ability you were talking about) to cure as many rare genetic conditions as possible
Sadly due to the intricate nature of genes and human expermient ethics it’s going to take a lot of time for that field to develop even if we’d have the tech to do so faster.
I so hope this happens. Going through this or having a child with condition must be heartbreaking.
@@alexcallender regular dementia and Alzheimer's are also sort of have to do with proteins clogging up the brain. It's a very simplified way of putting it, but not wrong. Collectively it's known as protein misfolding diseases and it also includes CJD caused by prions, but the difference is prions are infectious whereas most of other protein misfolding diseases are either genetic like for this poor girl or sporadic (=occurs on its own) meaning there is no known genetic component, but it's not a result of an infection either.
@@ProductiveProjects i admire you a lot! The future is 100% in gene therapy for these rare disorders and even for CF and all the other single gene diseases
this is so disheartening to see someone so young to go through something so horrible with no solution at all. I saw dementia slowly take away a good friend of mine 15 years ago everyday my heart broke more and more for them the one day they just left us. The hole that formed in our group of friends never has been filled. Taken far to soon
God speed my friend and i hope they find a cure for this horrible affliction
Very sorry to hear about your friend. Thanks for sharing.
I’m in the throes of severe cognitive impairment due to long covid. I’m young. It’s terrifying. I feel for this beautiful young woman and her family. They, and those like them, are and forever will be my superheroes.
Sorry to hear you've been unwell. Hope you get better soon.
My mom starting having dementia but she is 90 years old, to see this in a child is gut-wrenching.
Childhood dementia is caused by a genetic disorder of the proteins in the brain. These kids are born with it and they don't make the right proteins to maintain the brain function. The only real way to prevent this is with genetic screening of the parents and make sure both aren't carriers when they choose to have children.
@@kristingallo2158 or CRISPR. I have high hopes for CRISPR.
@@brendenpischke6060 I don't. Anytime they start doing stuff like that it ends badly for the regular people. Organ transplant for example. Poor people are given 3 days to wake up from comas so elderly rich people can buy their way on the transplant list even if they're above the age of receiving them. Or abortion, kill the poor children to harvest stem cells for skin care. It's never for the good of the majority.
@@kristingallo2158 Absolutely and positively NOT TRUE. Not in the U.S. or any other first-world country at least. There is no timetable for comas; whether to withdraw life support is determined based on brain activity, not number of days or the financial status of the patient. Also, abortions are not performed to harvest stem cells, in fact the only stem cells being used these days is from very old lines for political reasons. You are spreading absolutely false and very dangerous lies. People may choose not to be donors out of the fear your disgusting posts may cause, costing many potential recipients their lives.
@@kristingallo2158 Learn how to spell Pfizer and maybe you won't look so stupid. Oh, never mind.
My 10 year old nephew died as a result of leukoencephalopathy, he had absolutely the same symptoms as someone with dementia. It was so heartbreaking, he was a normal kid until about he was 5 or six, then he sort of developed backwards.
R.i.P. Alexander, we all think of you every day. ❤️❤️❤️
So sorry to hear that, Mathilde.
Oh no. I am so sorry. 🥹
That is so sad. 😥 I am so sorry.💔
I'm so sorry
I'm so sorry
I have a beautiful 15 year old daughter who brings me joy daily. I could not begin to understand what you must be going through. My heart and prayers go out to you all.
I deal with my mother who is 91 and has Dementia...i had no idea that there was such a thing as childhood dementia... prayers for this family
Dementia is such a terrifying disease, robbing you of your loved ones, robbing them of themselves.
My heart breaks for this beautiful young girl and her family. As a mother and father, there is nothing you fear more than losing a child.
Sad but least she has family around her who cares💖
Yet you'll certainly get it unless you die to sth else first.
@@MrCmon113 Not everyone tho
@Daphne Van Zant I am an Autistic adult. Vaccines do not cause Autism. A person is born Autistic. It's a neurological disorder, not a vaccine injury.
@J3RRY thank you. Someone with sense.
I worked at a school with a girl who has childhood dementia. She was already in a very difficult stage at the age of 11. She never even made it to Angelinas state of conciousness bevore her illness struck. It was very sad and very scary. This ilness needs to be researched and cured.
We agree!
Dementia is most commonly a protein misfolding disease. Unfortunately, misfolded proteins are some of the toughest naturally occurring biological substances, to the point that they can remain on a metal medical instrument after being sanitized, uv radiation exposed, and put in an oven and is a reason medical tools are thrown away or melted down after use. Misfolded proteins cause correctly folded proteins that they come into contact with to misfold and it becomes an exponential problem. The only hope of a cure are either nano-machines or bio-engineered proteins that correct the mistake.
b e v o r e ig. also there has been plenty of research. and i think it is curable, probably putting some molecule in the bloodstream that breaks down the plaque entanglements in the brain, but it's very difficult to find such a thing, ig.
prayers ops
prayers ops
I've seen a few videos on children with dementia, but honestly, had no idea it was so widespread. Don't stop what you are doing. I mean look, in 2 yrs 7million people have viewed this lovely girl and has seen what Childhood Dementia is. Do not give up.
Thanks @PickleAllergy :) We won’t stop until kids with dementia are finally prioritised and get the treatments, research and inclusion they so urgently need.
I thought I would have a happy ending, but at least it made me think. All the strength in the world to this girl!
Oh God, poor child - how unspeakably terrifying for her and her family - and at six she was so talented and so full of joy! Life can be wickedly cruel at times.
Life is cruel at all times. No matter how good you are you will eventually suffer and pass. It is much sadder when its a child though.
Really it's illnesses that makes life cruel...
Life?Are u questioning god?
god's will right? didn't god made people?
Lmfao reliturds n their cognitive dissonance.
@@RonLarhz I haven't got a clue what that last line means (apart from no sense) but if you're seriously preaching God to me, don't bother.
@@RonLarhz No, a man's sperm that fertilized a woman's egg is how you ended up here. It's SCIENCE, man. And that floaty guy you worship was created by someone who was made the exact same way.
I didn't even know this was a thing. My heart goes out to her and anyone suffering from this.
❤️❤️❤️
I pray for the family
right omg
@AlexPerez-gs3pithat’s not what the person said. They said they pray for the family… as in they wish the family well through this tough time. Support is needed in times like this. Why you have to be so negative is beyond me.
I’m not religious, in-fact I’m an Ex Christian and don’t like religion myself. But what I don’t understand is why you are being a bit hostile about it when intentions are in the right place.
It’s very rare to have childhood dementia
This is kinda crazy to see because I just recently lost my grandma that had dementia. I never realized it happens in children and younger people too. Its good you're bringing awareness to this.
So sorry you lost your grandma. Thanks for your awareness. It’s encouraging to see awareness grow as it’s key to more research and better care for kids like Angelina. We hope that progress for childhood dementia also benefits adults with dementia.
This is so scary. I’m 14, and I can’t imagine this happening. Lots and lots and lots of prayers and love.
she is so beautiful this is so heartbreaking, children don’t deserve this
Who does???
Nobody deserves it!
@@dawnvalentine74 saying that implies that children don't but others do. people only say things like that when it comes to children as if they're somehow more important and more special than other age groups when they aren't.
@@dawnvalentine74 I'm pretty sure you're just deluded and don't have great critical thinking skills.
@@dawnvalentine74 then she should have said " no one deserves this " instead of " children don't deserve this " . 🤷♀️
I’ve never heard of childhood dementia. A boy I knew years ago was always energetic, smiling, active, loved to drive his cars around, had tons of friends.. then slowly he forgot people, lost his ability to form words, he wouldn’t speak and just sat there staring. He forgot how to use the bathroom, eat, dress.. he couldn’t do anything on his own as time went by. He was taken to the best hospitals and not one doctor could find anything wrong with him. Doctors literally told the family they were guessing at a diagnosis. Soon this young man was bed ridden and died. He was 23. No drug use, no family history of illnesses like this. Could this have been dementia?
It definitely could have been, so sad.
Either dementia or Alzheimer's syndrome.
I feel so bad for that boy and his family I hope they are well
Yeah it could’ve been, or some other rare degenerative condition that isn’t named or well known.
Holy crap poor boy
i had no idea this even existed. my god, how horrifying and heartbreaking..
As with many others, I'm just now finding out children can get dementia, absolutely insane and horrific.
I didn't know about child dementia until now.
Many diseases didn't exist 30 years ago. No one digs for the basic causes of these 'new' illnesses. Treat symptoms is the name of the game.
I’ve never heard of this before!
Neither did I.
@@goingclear2647
Being that I was 17, in 1991, and being bounced around many hospitals due to my health, after I recovered from hospital to start, essentially, an Associates Degree in Applied Biology, with a lot of emphasis on molecular cell biology, which spilled over into evidence-based medicine, it's clear that there were conditions around the early -mid1990's, that had symptoms, but was simply baffling. Take for instance CJD: I still have a textbook, on Clinical Microbiology, that describes it as being due to a 'slow' virus, meaning the rate at which symptoms appear takes a very long time. It wasn't until much later that the revelation that a single, mis-folded protein, was the cause, and there is still a lot of ongoing research as to how's and why's.
My hunch is, much like that, and plenty of others, symptoms were known; but the unknowable part was the 'what the hell is this ...?'. After all, HIV/AIDS was described, in the mid- late 1970's as a 'gay cancer', as the then relatively quick progression from being HIV+ (in fact, back then, even the HIV virus was largely unknown ..) to AIDS, then death, was utterly baffling, especially as doctors saw their patients, just wasting away, with horror, and palative care was the only option.
But now HIV is one of the most understood virus, but there is still no vaccine in sight, due to it's ability to replicate and mutate, at the same time, not unlike the 'common cold' virus. Fortunately, there are drugs, far better that the all or nothing choice of AZT, that limits how the virus replicates, and, rather like the influenza virus, there will come at time where a vaccine is created, that enables an immune response to the most prevalent antigens/ surface proteins that, unless HIV mutates to having completely different strains and sub-strains, will elicit an immune response to the viral particles, destroying them ...
In short, it may very well be that symptoms of Childhood-onset Dementia existed further back than 30 years, and possibly even 40 years, but doctors simply didn't understand what they are looking at.
In fact, most working in STEM, in their research, or real-world applications, will admit to being perpetual students, given very little in any of the STEM fields are static, meaning that medicine is always evolving ...
[Edit: and yes, doctors can only treat the symptoms, because they, frequently, have little option but to do so, which is especially true in the entire field of Palative Care: they know, that, in many cases of Stage IV cancers, a full recovery is wholly unlikely, especially the most aggressive forms, something the patient often also knows. Both doctors, the nursing staff, and the patient all know that the only thing the forementioned can do is to ensure they (the patient) is as well cared for as possible, and to keep alleviate the worst of the symptoms, right up to the end ...
I get where you are coming from, in that there may very well be a much greater incentive by the largest pharmaceutical companies to create treatments that just concentrate on the symptoms, and not the underlying cause, in much the same way a maintenence contract is often larger that the cost of building the thing that requires maintenence in the first place...
... but that doesn't mean _all_ of medicine is like that ...]
@@nigelft she's basically a elderly person trapped in a child's body
I nearly cried when I read "there's no cure for Angelina." I didn't even know that children could get dementia too. Sending love to her and her family. ❤
The symptoms are similar to dementia hence why it is call Childhood dementia, but it isn’t the same as dementia that the elderly get. It’s heartbreaking nonetheless
@@unwaveringguilt The world can be a wonderful place full of love and kindness.
I can relate to her,I have a form of dementia.im 66.It makes me so sorry for her. Bless you Angelina.Live your life to the full,it's not easy. Do your best.👍
I was so shocked at the end . I felt so bad for her. I really hope God shower His Kindness on her.
@@brucekilby9957 oh my I’m so sorry 😢
First time to hear about childhood dementia... So sad... I have a hard time processing this even though I have no children... Blessings to her and her family🙏
It's really very sad. We thank the family for providing the images. The purpose of clarifying this condition of childhood dementia is very important, especially for parents who are in agony about such a rare condition with their children and are often unable to obtain information. I remember a child here in Brazil whose parents looked for help, but couldn't find the correct answer.
I watched both my grandparents die from dementia; watched them slowly decline. I loved them (and still do), so much. It would be my worst nightmare to watch my little girl go through the same thing, I can’t imagine the pain her family is in, and her. 😔
Watching my 86 year old dad go through this now. He was once a 14 stone, 6ft tall, very muscular and strong guy who is now shrunk to a tiny 5’8, 9 stone. I know it’s just appearances but this is what I find the most shocking aspect of this awful disease. Must be agonising watching a child go through this I just couldn’t imagine the pain 😥
My 57 mother died from this terrible disease. I watched her turn to yellow, then to leather and then she passed because she no longer knew how to eat or drink water. This poor girl is way too young to go through this, I loved my mom very much but because I know this pain I honestly feel it would be even more painful for one of my kids to go through it because they should of had a long life. There is no cure.
my grandpa declined in a few weeks he was all there then 100% gone in 3 weeks
as they were only feeding him plant sludge diet, I was feeding him a meat based diet 70%.... he was a vegetable by the time he got back home.. and passed the next day
I blame The nursing home
@@punker4Real I feel sad for you're grandpa 😔
at least he's in a better place 🙏🙂
So ... go for a genetic test for both of you and be sure.
I’ve worked for years as a dementia care specialist and I actually never knew children could develop this disease. Wow. Heart shattering.
The problem is thinking of it as "this disease". There are multiple causes of the condition, "dementia" is just a catchall term for the result and the process. At one time schizophrenia was known as "precocious dementia", but then characteristics distinguishing it were recognized.
@@goodmaroin everything I read about dementia, it’s called a disease. Thinking of it as a disease (or not) doesn’t change anything.
specialist and you didnt know about something like this?
I'm glad its rare.
That's weird u didn't know about this
This is why cont education is so important for health professionals!!!
Thank you for raising awareness. Subbed instantly, as heartbreaking as this is, it’s very important.
I didn’t know this existed and I will try my best to educate everyone I know.
This is so very crushing. I wasn’t aware of this condition. I will donate to childhood dementia organization
Thank you for your care and support!
Losing an old loved one to dementia must be hard, but I can't imagine how heartbreaking it'd be to lose your child to dementia… sending prayers, and love to the family of this young girl. ❤️🩹
Yes it is, but you do see young people in those places too.
My first exposure to childhood dementia was Benjamin Button. There its a manifestation of the fact he's in a preschooler's body but is a geriatric. I had no idea until now that its an actual thing. My heart aches for parents who's children have dementia. Losing a child is horrific. Watching them drift away and disappear like this has gotta be absolute torture.
@@frankm.2850 *whose ;)
Why does "God" let this happen to a child?
She's so beautiful. As a mother, this guts me. 99.9% of mothers would put themselves in the place of their children (father's too,but I'm a mom.) This is going to be so difficult for them.
@@sticksnstonespatriot1728 those pageants were not what caused her dementia. Educate yourself.
@@beckiemunson4928 found the pageant mom.
Your name is even "Becky".
@@sticksnstonespatriot1728 Pageants don't cause dementia you nutjob
@@sticksnstonespatriot1728 u are extremely uneducated. Pageants do not cause dementia. I do believe pageants are in most cases harmful to a child but not to this extent.
@@sticksnstonespatriot1728 it's an incurable genetic disease tho, not caused by a pageant or anything like that
thats so sad and revolting. heartbreaking to see this beautiful girl suffering from dementia at such a young age. god bless her family and give them all the support in the world.
Thank you for sharing with us Angelina. God Bless you!
yesterday was the 5 year anniversary of losing my brother to a brain tumor - he was 18 when he passed. in his last couple months he had some dementia-like symptoms and it was heartbreaking seeing my twin brother regress so quickly, seeing that was traumatic to me. thank you for getting this issue out there. it's truly horrible to see.
Very sorry to hear that, Julia.
I'm SO sorry to hear that! Stay strong! ♥️✝️🙏
Please accept my condolences on the loss of your beloved twin brother. I’m sure the loss of one who has been with you for so long has been more than difficult. Sending you thoughts of peace and healing.
Sending you love as a fellow twin 💜
I'm so sorry for your loss. Brings tears to my eyes.
I had a very good friend with young-onset dementia. I loved talking to him. He was only 16. Finally he told me he was expected to live only one more year, then the following week he disappeared. He deleted everything from his social media, never told me where he was going, and I never got to meet his family. This was about four years ago. He never had a happy life, so I hope that he had a very happy rest. He lives every day in my heart, and I hope that proper awareness of childhood dementia can be spread. Their lives are so very short, let’s do what we can and help them feel satisfied. Let’s not spend it crying and spending it loving.
What a special friendship only given by God himself 💙 God takes all the innocent home with Him where he will wipe away every tear and where there is no more pain and suffering, I believe your friend is with his creator living in everlasting peace ❤
Man, what a message. Love rather than cry/fear. You look like a true christian... maybe not christian but a person with a good heart. I needed to hear this. This treatment... It's obviously better for the victim and for us, as a natural product for the soul. Life is too short to be lived sadly.
"Blessed are those who mourn, for they will be comforted." This keeps giving me questions, though.
@@LC-df3jl why do you think God gives children dementia? So that their short lives only know suffering? Sounds like a great guy
why do people always talk about God when someone innocent dies
It's very possible that he's still alive. When I was a young teen on the internet, I had several friends over the years who exaggerated or lied about health conditions. I even know someone well who faked her death online. I know that "he might've lied" isn't a great thing to think about your friend, but at least that would mean he's alive right now. Lots of kids with bad home lives will make things up like that, unfortunately.
Sh and her mom has such a wonderful voice :) it’s a shame how the poor girl has to suffer with this illness for the rest of her life…she had such a bright future I hope she can overcome this.! Wish I could donate but I’m not at the best financial situation currently however in the future I’ll definitely donate ^^
my dad was recently admitted to a ward for his dementia, being the youngest there. i can only imagine the pain these parents are going through.
Sorry to hear about your dad. Thanks for your care.
I believe my dad had certain signs as young as 9 years of age, after hearing stories from my uncle, his younger brother and his older brother. But he was such a nightmare in the behavior dept. that once it started affecting his decision making, none in our family including mom or a close aunt recognized it for what it was: he was acting exactly the same way for decades.
Wishing both of you the absolute best for you fathers. I'm sending both of you lots of love
I’m sorry that happened
she’s so beautiful its unbelievably sad how robbed she was in life.
This is so awful. My prayers are to Angelina and her family and anyone else going through this with their children 🙏🏻
I have known about Dementia since I was a kid. But I never knew kids could get it. This just tears into my soul now.
I just had to put my husband into a memory care facility, I can’t even imagine my child going through that. My prayers go out to her and her family! ❤️🙏🏼
So sorry to hear..sending respect &best wishes from the Netherlands 💜🌈
best wishes from florida. i’m so sorry about everything… dementia is awful.
I'm so sorry to hear that, best wishes from Spain ❤
I’m sorry for this change you’re currently going through. I wish you the best, praying for you from Oakland, California.
I am so sorry for you and your husband! My husband has moderate dementia. He has several family members including his parents that died from it. You really do find out who your friends are under these circumstances, and the worst ones are family members.
I had a from of dementia in my late teens and early 20s as the result of another illness. It was terrifying. It's kinda like when you walk into a room and forget why you went in there, but times a million. Your mind just feels... broken. There were nights where I went to bed almost certain I wasn't going to wake up the next morning. Even though I was very ill and doctors were pessimistic, I thankfully recovered. Not only that, but I was so out of my mind at that time; I'm amazed I didn't get myself hurt or killed.
Could you please share the name of what you had? Thank you
It's amazing that you recovered.. I thought nit was incurable
@@vh2205 ^ not familiar with recoverable dementia. Would love to know too
How did you recover from a type of dementia? I'm just curious.
@Jared Troth I had something similar but not that bad… did they even ever found out what it was? I’ve been discovering more and more people with this problem, that recovered almost from night to day, out of nowhere, and there was no medical explanation so far
This is simply heartbreaking!!!! She was such a talented and beautiful young lady(still beautiful) on her way to amazing things...... it makes me feel grateful that my son is healthy. Its so unfair for this to happen to any child! Big hugs from Kansas. ❤❤❤
She’s so beautiful. This breaks my heart
If your goal was to raise awareness, it's working. I honestly had no idea that this sort of thing could impact someone so young.
Thanks Ataratic. Awareness is actually one of the big barriers to action for kids like Angelina. Many people are surprised to know that as many kids are born with a genetic disorder that causes childhood dementia as better-known (and actioned) conditions like cystic fibrosis. The technologies and brains to find solutions for kids like Angelina exist. The issue is lack of awareness and investment in urgently needed research. Think of childhood dementia like cancer or HIV was before action and research started to impact quality of life, survival and prevention.
@@childhooddementiainitiativ4040 Onto the most important question - in addition to raising awareness, what can I do to help?
@@migbham1 Thanks for asking. Beyond raising awareness, you can donate to help transform research, care and quality of life for children with dementia. If you know researchers, or families impacted by any of the 70 genetic disorders listed here,: www.childhooddementia.org/what-is-childhood-dementia please let them know about us! We are keen to connect with them to ensure family voices are heard and researchers are networked and able to collaborate and share information. You may like to take part in our FACE it campaign and get others to join you. It's great fun (and like being a big kid): www.childhooddementia.org/faceit
@@migbham1 Frankly what can you do? If you wanna having kids, go for a genetic testing. If sth is really wrong talk to an expert.
I watched my father-in-law slowly die of Dementia for over 7 years.
He went from someone who literally built his own house run a successful shopfitting company to not being able to do anything at all for himself and couldn't even recognize his own wife of 40 years.
I can only imagine what her family must be going through and how utterly useless they must feel in her fight against this awful disease.
This shit is rough, no one should go through this, no matter what the age is.
😢😢😢 I am so sorry....I don't know what else to say as words are hollow in the face of what Angelina and her family are suffering through. I can only wish Angelina all the best happiest moments. I had no idea that young people like Angelina could have this disease. It has taken members of my husband's family so I know it's a devastating experience in adults....but to know it happens to children as well is more than soul shattering. I am sending my deepest love and support to Angelina and her entire family. 💞💞💞
Thank you for caring.
Most children are afraid of bugs and spiders. No child should be afraid of not waking up tomorrow. This is heartbreaking
This is heart braking. Gave me tears in my eyes.....I never knew this was a thing....
Heartbreaking, my heart goes out to that beautiful angel and her family ❤
I have heard of certain genetic conditions like Batten Disease, Niemann Pick, and Tay Sachs that led to mental deterioration in children over time. Are there other causes? In any case, I pray that children like these can eventually be helped.
Hi @yooneeque1 You're spot on. Sadly, we can share that there are over 70 disorders that lead to childhood dementia and they include those you already know about. They are inherited genetic disorders children are born with. You can see a list of these disorders here: www.childhooddementia.org/what-is-childhood-dementia
This is why more genetic testing needs to be done before having kids
@@childhooddementiainitiativ4040 Wow, that's quite a list. I've heard of a few of those disorders from TV specials and magazine articles, but I didn't recognize the majority. I just can't imagine the agony of watching a child deteriorate like that; it goes against everything that childhood represents. It's sad enough with adults, but I think people recognize that it is a distinct possibility as you age, and there are outside care facilities available. What options are there for children if the families can no longer provide the necessary care?
@@20PINKluvr Yes, but at times there have been mistakes in the screenings, and the parents unknowingly passed on the mutant genes to their offspring.
I think Huntingtons too
My father is in his 70's and suffers with dementia. I just did not know it could strike so young. My heart goes out to anyone affected by this disease/condition.
Терпения и сил семье, а девочке излечения, пусть вся современная медицина поможет ей как можно скорее, она замечательная и все детки и люди заслуживают счастья и здоровья❤🥺
Oh my goodness how harrowing for this beautiful soul and her family,for me out of all the horrible illnesses this is the worst because it wipes out all your memories of your pass life,my heart goes out to her.
Oh, it’s just so sad to see how the light literally goes out in her eyes in the last clip.
I knew childhood and young people dementia existed, but there's a big difference between 'knowing' and 'feeling'. This is the first time I've seen an actual person behind the diagnosis. That makes a horrific disease even worse. I really hope that scientific research will eventually discover ways of halting and even preventing / mitigating the various causes.
jesus christ. this is so sad. thank you for bringing awareness to so many people.
This truly made me sick to my stomach. God bless you kids
Watching my mother slowly decline from vascular dementia after two strokes was heart breaking. I can only imagine what it’s like for loved ones of a child with dementia.
So sorry to hear about your mother. It’s heartbreaking no matter the age of your loved one. Thanks for your care and interest.
This is heartbreaking, I never knew there was childhood dementia at all! My heart goes out to the families that have to slowly lose their child in front of their eyes. Thank you for bringing awareness.
Thanks for your comment and care.
Heartbreaking. Prayers for her and her family
She’s so beautiful! This is heartbreaking 😢
Oh my goodness. This absolutely took my breath away. I wasn't even aware that this was a condition. My heart breaks for that young lady and her family.
This is so sad. I didn’t know children could get this, until now, or rheumatoid arthritis, until my friend’s little girl was diagnosed with it at a very young age, she is 12, now.
bless her heart. she seems so confused and scared. peace and healing to this sweet young lady and all others combating this terrible disease. 💔
This was in my feed and this is very sad and not something anyone should get, especially kids/teens. My heart goes out to the family and her as well.
Thanks for your care and awareness.
As someone who has a degree in Geriatrics and specializes in Dementia and Alzheimer’s, I have seen some very young people who have dementia. I never had a experience with someone so young. It is crazy that this evil disease can hit anyone at any age. My heart breaks for her.
childhood dementia is a symptom of a genetic disorder (usually one of the lysosomal storage diseases) rather than something like alzheimer's. but yes, it is a tragedy
Its not dementia. Its neurological damage.
As a doctor, I have a few diseases I am terrified of like utterly terrified to the point of having anxiety attacks just the possibility of it and one of them is dementia. I had hyperthyroidism which made the same symptoms as dementia so I couldn't sleep for awhile until I was diagnosed with the early stages of Hashimoto's. Not gonna lie despite being a shitty lifelong disease learning I had Hashimoto's instead of dementia made me happy and relaxed.
Same here until i started following suggestions from functional medicine Dr. it made a difference! i can now remember why i went into a room ...
Yeah, the brain fog/fatigue/depression/etc when one has untreated Hashimoto's (or isn't getting the right dosage of the hormone) can be really scary... Hell, it can be hard even when one is getting properly treated.
I have both of those as well mine is now hypothyroidism though but oddly enough still symptoms with hyper I fan eat enough for a 400 lbs sumo wrestler and still lose 3 lbs somehow. Even maxed out on my levothroxine my levels still test through the roof . There's never enough sleep im always exhausted. Alot of people don't know much about the thyroid amd how much it really does effect every day life. This video like others does give perspective but life's generally unfair for most people. It's just what you make with it.
Dementia and MND are really high on my "I hope to God I and none of my loved ones ever suffer from this" list. Awful, awful diseases.
I watched my dad die from early onset dementia. It’s horrific.
this is heartbreaking, and she is so beautiful
Wow! You can see it in her eyes. I hope they find a cure for her
I know you're trying to be positive, but there's no cure for dementia as of now. Only treatments to lessen the symptoms.
She'll have to do that herself
@@MyNameJeff00 Dude what
@@MyNameJeff00 she cant do it herself. Dementia is fierce and ruins the person it takes over. The brain shrinks because of what it does. Educate yourself on dementia.
There’s no cure.
I researched it, and the maximum life expectancy for childhood dementia is 28, with most passing by 15. It varies with the type. I’ve never known about childhood dementia and honestly researching anymore than what I’ve done will just make me cry for the rest of the day. If anyone wants to know more you’ll have to do a bit more on your own. Rest in peace to all the people who have passed from this, young and old.
I subbed frequently at a school for a child with this. She was as likely to remember me as not. I felt so bad for the kid - not remembering friends or childhood memories and experiences.
I am terrified of later life dementia, I cannot even begin to fathom childhood, or even early, onset dementia. So sad.
Heartbreaking she’s a beautiful girl 🤍
My mum has vascular dementia and it breaks me every day. Angelina's dementia made me cry. It's heartbreaking. Strength and love to Angelina and her family.
I'm so sorry! I wish science comes up with something quickly to correct her state. Lots and lots of strength to your family!
Blessings to all these children, it's so heartbreakong to seeing them suffering
Without question, this is one of the saddest childhood issues around. Tragic.
So is Batten
We agree, Sarah. Batten disease is one of the 70+ genetic disorders that cause childhood dementia. We're working to get action, research and better support directed to help kids with all of these disorders.
Yes this is unacceptable...I work with seniors with dementia but I did not know about childhood dementia. There needs to be more info like this out here so something can be done about this. I will keep your family in my prayers. This has truly shook me up.
What it's unacceptable. It's caused by a genetic disorder. And the future is even worse.
😅❤😂😮😮🎉😢😊😅😅😮😮😂😢😢❤😢❤😮😮😂😮😮😅🎉😅🎉😅😅
@@AedanSpurs1 good point
I had horrific aphasia and memory problems after several TBI’s and a mini stroke when I was her age. I’m still not back 100%, but I can finish my sentences and I know where I am now. I can’t imagine that never returning. It was incredibly devastating. People have no idea just how important your brain is to every day life. Waking up each morning and starting over completely was one of the hardest things I’ve ever had to do. Someday I hope there will be a cure.
Wow, I looked it up and want to burst out crying! love to you all!
Thanks for your care.
God bless her. She’s beautiful. I cannot imagine what this is like for her and for her family to witness her deteriorating like this. 🤲🏻🙏❤️
Dementia is really sad, especially at this young age. Hoping the best for her and loved ones. ❤️🩹
This is the first time that I'm seeing this disorder. I worked with adults and seniors with dementia. How sad for this young girl. It's a terrible disease at any age but especially a young girl.☹
In fact nobody in this video mentions the disorder causing her dementia.
This is so horrible. I’m gonna cry.
Brakes my heart this beautiful little girl 😮😢