This is what childhood dementia does
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- čas přidán 7. 08. 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
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?
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
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
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.
I was concerned
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)
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 :(
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.
"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..
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?
"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
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.
The brain getting all clogged up with proteins sounds reminiscent of Creutzfeldt-Jakob disease aka mad cow. Is this a prion thing as well?
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.
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
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.
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.
@@brendenpischke6060 this phizer shot is a crispr test run. It's not working real well.
@@kristingallo2158 I was just thinking that about Covid shots, because Pfizer is expecting to receive FDA approval for their vaccine for 5 - 11 YEAR OLDS in the U.S.
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
She just turned 20. She’s a trooper. Breaks my heart because she was normal at 14. Completely normal
She’s still alive?
The fact that many of us are finding out about childhood dementia because of randomly coming across this CZcams clip is a real problem .
Yes, we agree.
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.
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.
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.
She’s so beautiful. This breaks my heart
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 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
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 had no idea this even existed. my god, how horrifying and heartbreaking..
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 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 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 😢
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 thought I would have a happy ending, but at least it made me think. All the strength in the world to this girl!
It’s heartbreaking that she is having to go through this. Thank you to her, and to you for helping spread awareness about childhood dementia.
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
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
I work with elderly dementia patients. I can't imagine what that girl is going thru at age 16 with the condition. My heart goes out to her.
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🙏
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.
I had no idea. I have no words to express what I'm feeling for her and her family. The best I can mange at this moment is much love to Angelina and her loving parents.
honestly, i take my abilities to carry out everyday tasks for granted, but whatching these videos makes me re-evaluate everything i have. Our body works so hard to sustain us and its about time we pay it with more gratitude. i send my deepest regards to angelina ❤️
Learning about conditions like this make me value the smallest things
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.
she’s so beautiful its unbelievably sad how robbed she was in life.
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 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
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
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.
This truly made me sick to my stomach. God bless you kids
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.
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 70+ rare genetic disorders. Sadly, 75% of children with dementia have a life expectancy of 18 or less and fewer than 5% of the disorders that cause childhood dementia have any therapies.
DO VACCINES CAUSE THIS?
No. Children are born with these 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 70+ 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); 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.
You can find more info on getting involved here: www.childhooddementia.org
You can learn more about childhood dementia by watching our new animation: czcams.com/video/E44qTywdS_I/video.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 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
This is so scary. I’m 14, and I can’t imagine this happening. Lots and lots and lots of prayers and love.
this is so sad i feel so bad for her she is so pretty i hope she is okay cause that is awful like your life barely started, i turned her age today and i cant imagine going through that
Most children are afraid of bugs and spiders. No child should be afraid of not waking up tomorrow. This is heartbreaking
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 is so horrible. I’m gonna cry.
This is a genetic condition and can strike at any age. My father made it to 60 before symptoms became limiting as did his sister(I took care of him until he passed and am caring for her now). They were fortunate, their mother was mentally gone by around 50 and was terrified of light and sound.
Even more tragic is when it strikes children, but also for the family who are doing the caretaking. I've spent the past 13 years of my life caring for my father and aunt, it's unbelievably difficult work and combined with the fact that you are losing a person you love. My heart goes out to the family, it's still a long road ahead and at a certain point the victim won't know any better but the family will which makes it very, very hard emotionally.
Please take care of yourselves as much as possible and I am terribly sorry for your loss.
"This is a genetic condition and can strike at any age"
Not really.
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.
Oh, it’s just so sad to see how the light literally goes out in her eyes in the last clip.
This shit is rough, no one should go through this, no matter what the age is.
I watched my dad die from early onset dementia. It’s horrific.
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.
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.
I am terrified of later life dementia, I cannot even begin to fathom childhood, or even early, onset dementia. So sad.
I wouldn’t wish dementia on my worst enemy, but the fact it happened to an innocent girl is infuriating.
It is infuriating!
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.
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.
😢😢😢 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.
Heartbreaking. Blessings to Angelina and her family.
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.
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.
Horrifying.
Makes the caretaker album even more sad
This feels so similar to young stroke victims. I feel for all the joint sufferers, survivors and family
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.
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.
Although this is very different to the type of dementia the elderly get, there's a whole science behind it, the symptoms are basically the same. Such a shame so awful, heart goes out to this beautiful young lady and her family ❤️
I've seen that, like the way she looks with confusion, but only in old people. This is tragic.
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.
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.
I work with elderly dementia patients….had no idea kids could get this, a whole new level terrifying
God, I wish I could donate. When she was talking it was almost like her mind just wasn’t present, like she was a shell of a person. This poor girl will never get the chance to fully experience life, and it’s heartbreaking. Life is truly cruel.
Heartbreaking she’s a beautiful girl 🤍
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.
Just looking at her as a child really made me feel bad, a beautiful girl, with such a long way to go in life, could be cut short by such a horrible disease, dementia absolutely sucks.
This girl is around 18 now... I wonder how she is doing, obviously, she is in the later stages of the dementia disease, losing more memories until nothing is left. I don't think she'll be able to make it... but I really hope some miracle saves her, or anyone with dementia for that matter.
Angelina was recently featured in this news report. Her mum has worked really hard to build awareness and generate action for kids with dementia: www.sbs.com.au/news/small-business-secrets/video/ange-is-only-19-yet-shes-struggling-to-survive-an-older-persons-disease/8zum254hu
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.
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.
😅❤😂😮😮🎉😢😊😅😅😮😮😂😢😢❤😢❤😮😮😂😮😮😅🎉😅🎉😅😅
@@LetTheBellsRing good point
Brakes my heart this beautiful little girl 😮😢
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.
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. 🤲🏻🙏❤️
First time I've even heard about this. Cannot imagine how scary this must be for her and her parents. As a mom all I ever want is for my children be healthy and happy. This needs to be more publicized, more attention drawn to it. I never even knew it was possible.
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.
Poor girl, my heart is aching watching this 😢
i'm balling my eyes out. this completely broke me,my grandma had dementia but well she is 87 and lived and lives good,but this is just pure innocent child!
i hope we'd find one day a way to help
Your sentence structure nearly gave me dementia
Recent medical AI related advances are snowballing. A lot of amazing things are happening, on all fronts! There is hope! :D
This hits so much harder when you’re the same age as she was when it happened. I can’t imagine being in her shoes, she just looks so lost
Hits much harder when you’re in your 20’s and realize how little of her life she actually got to enjoy.
As a father this absolutely breaks my heart. I've just recently found out children can get this horrible disease. I recently saw a 7 year old with this, the video brought me to tears and I'm not one really cry. My heart goes out to all the children and families that have to deal with this.
This is so very sad because the first time you see her in her current state if you look into her eyes you don't see her anymore. I couldn't see her personality at all. I could see tons of personality even when she was 6 years old. This is so very sad. Thank you for spreading awareness. I hope that recovery is possible and that this little girl is able to live a happy and full life .
I didn’t know children could get dementia. This is so sad
That's so horrible, I never imagined this could strike kids. 💔🙏🌸🌸🌸
I have eleven years experience looking after dementia patients and private clients but I’ve never heard of children dementia. I knew that people as young as in their 30’s could suffer from this cruel disease. Tragic that children can suffer from dementia!
Life can be so cruel. How in the world can be fair that such a young person can develop a disease that erases your mind like this? 😭