This is what childhood dementia does
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- Опубликовано: 29 сен 2024
- Angelina's story gives devastating insight into the impact of childhood dementia.
Learn more, get involved and donate here: www.childhoodd...
If your family is impacted by childhood dementia, we have information for you here:
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If you are a health professional and would like to learn more about childhood dementia, please visit:
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If you are a researcher and would like to learn more, get the latest information and collaborate with other researchers, please visit: www.childhoodd...
You can learn more about childhood dementia here: www.childhoodd...
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:
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/ childhooddementia
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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: ruclips.net/video/E44qTywdS_I/видео.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 ❤️🙏🇦🇺
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
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.
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.
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.
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 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 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
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 heart goes out to you man. I hope you get better soon
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.
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
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.
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.
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.
Thats horrible. Dementia happening to adults already sucks, but a child being put through that is awful. Wishing the best to her and her family, and anyone going through this.
I didn’t know children could get dementia. This is so sad
That’s just horrifying. I didn’t know this was something that could happen. I remember my grandma getting dementia a few years before she died. It’s a truly horrible disease. I would sleep on the couch in the living room so that I would be there when she woke up at 3am not knowing where she was. I’d sit there until the sun came up with her just talking. It was the same method everytime. Wake up to her crying, try to get her to sit down, make her some tea, and answer her same 5 questions over and over for hours until the sun came up and my family woke up.
Luckily, she always remembered me specifically. She would sometimes get me confused with my dad (her son), but considering i look exactly like my dad did when he was younger, it wasn’t surprising.
Sorry to hear about your grandma. We agree: dementia is truly horrible.
@@childhooddementiainitiativ4040 thanks. She got to live a full life and go out with a big extended family she was the matriarch of tho. These kids are just starting off. :(
Thanks for your care.
That's horrible!! No one deserves to ever go through that! No one!! Sending prayers to her!! God bless you and your family! 🙏✝️♥️
I never knew it could hit someone so young. I work in a home for the elderly with dementia, giving music therapy with the harp with some success in comforting and calming the folks there. I just don't know what to say to his, it's heart breaking.
I watched my dad die from early onset dementia. It’s horrific.
This is so sad 😭 lots of love ❤️
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.
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.
I had never heard of childhood dementia until this video. This world is full of heartbreaking struggles.
You're absolutely wrong. This world is full of genetic disorders. We know maybe 1000. That's 1%. Yes, ... there're 1,000,000 genetic disorders. So the future is just worse.
I never knew childhood dementia was even a thing. Thanks for the awareness
I wish her the best, but... what can we do, really?
I'm glad her family is very supportive anyway, and that they'll stay with her to the end.
Still hoping for a miracle cure...
Miracle? You mean a breakthrough in medical advancements?
@@strumblers3701 no, just a miracle
waiting for your God to do something doesn't do anything
Prayers, prayers, and more prayers I just can't imagine what this family is going through. This isn't easy and people with dementia are extremely difficult to deal with. Looking at this makes me cry and sad.
Amen! My mom is in early stages and its very difficult.. Combativeness, forgetfulness,anxiety and uncontrollable crying. I hate to see this happen to her but unfortunately her health has caused this like my grandma. Medical induced dementia.. 😔
When people stop praying and waiting for a miracle to come from heaven and start doing something, promoting research, telling their governments they have to invest in healthcare research to find a cure, maybe, only maybe there will be no more Angelinas. But people prefer to look, say they feel sorry and pray waiting for God do their jobs for them because they live in their own bubble. God made humans intelligent, it's time to start to use this intelligence.
@@samanthaabreu782 be the example! Sometimes its hard to detect right of the back unless you have been around people that have it. Until then prayers ,prayers and more prayers to come for those that suffer with this.
@@samanthaabreu782 thanks for your feedback I respect how you feel, but with me prayer/GOD is always gonna come first. These doctors, law makers and etc are people just like me and you. GOD holds all the power to change any and everything in the universe. GOD made every living thing on this planet including you, I am not sure how some people could have more faith and trust in man than The Almighty GOD. Stay safe and be blessed
I pray for more disease and my prayers are always answered. You guys should try different gods or something.
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
Man! I never knew this was even possible. I feel so sad for this beautiful young lady, seeing her change from a vivacious little girl to a struggling young lady. My mom had dementia when she passed, but she was in her 70's/80's when it started, Angelina is WAY too young to to be suffering with this. All love & prayers for her, and her family. ❤🙏
I'd be interested if exercises used by special clinics on brain trauma patients would positively effect childhood dementia. Also, some in progress research shows that music and singing may help dementia patients. The brain is supposed to be very elastic.
The problem (from what I understand, I'm not well-versed in neurodegenerative diseases but I have a tangential interest because I'm on the spectrum so atypical neurology is something I like to know about) is that neurodegenerative diseases are basically the neurons themselves slowly disintegrating and withering away.
We have the same name and we're the same age my heart goes out to her and her family
So sorry for her. Couldn’t imagine how bothering and exhausting it is to constantly be mentally confused and unaware of the things situation around you
I don't remember ever hearing about young people getting dementia as I was growing up. This seems like such a common thing now and it's so sad. I wish there was some cure to this horrible disease.
it was never common.
Thanks for your comment and awareness @JessicaDuBois Childhood dementia is not new. Awareness of it, however, is now finally growing, which is great, and why you’re hearing about it. It's caused by over 100 rare genetic disorders that children inherit. These disorders occur around the world but previously attracted very little attention or research. We've added info under the video description and you can see a list of the disorders here: www.childhooddementia.org/childhood-dementia-disorders
It was misdiagnosed a lot back then. Awareness and education is up and coming now that we've advanced.
A girl born in the 1960's was born with it and died at 18 (look up Haidyn Flowe) and had no diagnosis until Haidyn was born with the condition and the family correctly diagnosed the deceased girl.
I had no idea. Not a clue. Oh my. You know, for many years I've seen people make the claim "why did you post this?" "Oh, for awareness." "Awareness? That doesn't DO anything."
Well....it made me aware. So much in fact that I wish to donate to science working on the issue. So much that I now want to share it so others like me can join in. This is how change happens. Awareness. So fueled with emotion right now. Didn't expect any of this.
Thanks so much for your comment. Awareness is one of the big barriers to action for kids like Angelina. 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 Nobody in this video mentions the genetic disorder.
Poor baby girl! She never even got the chance to live life to the fullest before such a hard thing happened. 😭😭😭😭
This is so sad. It's unfair that she is having to deal with this. All people affected by dementia (both the young and the old) deserve the help that further research could bring
I'm tearing up right now watching this... I didn't even know this was possible till now... I knew that it could happen to people younger than 50 but I didn't know it could happen to children. I truly hope by the end of this century we can find a cure for this horrible disease.
My cousin is a research scientist in America for Altzhiemers. She has been doing the job for nearly 30 years since, and including university. Hopefully she will help to find a cure one day.
I’ve had two family members go through Alzheimer’s. My mother and her sister. I wouldn’t wish it on my worst enemy. I told myself that if I were diagnosed with it, I would take a walk in the forest and pick a fight with a bear. I can’t imagine a teenager going through something similar.
This was so painful and so very sad to watch. I couldn't finish the video. My mother had dementia for 15 years, eventually dying of pneumonia. She was greatly helped by the drug Aricept, and she knew us all and what was going on around her right up till the end. But to see this beautiful young girl, who should be enjoying life for decades to come, with this condition is just heartbreaking.
Jesus, I can’t even begin to imagine the emotional torture this must be for parents 💔
Had heard of early onset dementia but never childhood... that is terribly tragic it pulls my heartstrings. My grandad is currently struggling with dementia and that's hard enough when someone has lived a full life. That poor girl and her family..
My heart breaks for her. To know that we are both of the same age but that one of us is suffering from a disease which cannot be cured is truly tragic. My heart goes out to her and her loved ones. I am truly, truly sorry.💔
My mom passed away at 89 from dementia. I had no idea that children could have dementia. It is a cruel disease. I'm heartbroken learning this.
This genuinely makes me sick... why does this have to happen to innocent people?
I know, the fact I feel that innocent people get more things done to them than bad people, I’ve lost hope in this world.
I know, the fact I feel that innocent people get more things done to them than bad people, I’ve lost hope in this world.
Edit: why did I say the same thing-
You were only put here for one reason and that’s to know ur Creator. Life’s short than ur gone
Oops- I said the same thing twice for some reason
@@An_Evangelist_Who_Loves_Jesus Luckily that's not true, because that would be an incredibly dumb, and incoherent, reason.
I had no idea. This broke me. I am now an old man and I would trade places with her in a heartbeat.
Oh my goodness! I had no clue there was childhood 😭😳Dementia. I think every disease an older person can get a child can get and vice-versa. Even our pets.
Unsure about cats, but there is doggie dementia. My Boarder Collie had it.
And no, I'm not comparing my dog to this lovely girl. Just pointing out how unbelievable illness can be. God bless them all.
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. ❤❤❤
So sad that she can not have a normal life of growing up.
I never knew this could happen to innocent youth. Dementia is always talked about in relation to the elderly. So sad and unnerving to learn her story. God bless these young children
this is honestly the most terrifying disease I know of
Unbelievable. Both my parents had dementia, but they were in their 80's. Never knew there was ayounger version, but in our world nowadays, with high spikes in ADHD and Autism, childhood dementia now a thing as well.
Sorry to hear about your parents. Dementia is sad no matter the age, isn't it? Awareness of childhood dementia is now growing, but the number of kids with dementia hasn't spiked. It's just that the genetic disorders that cause dementia (there's over 100 of them) have attracted little attention, research or action until now. We're working to change that.
It's extremely rare for a child to develop dementia. It's sad. But dementia usually effect people 60s and over.
Thank you for stating the obvious. But obviously it DOES occur and hence, they are trying to bring awareness, which is the reason for this video.
Early onset dementia can begin in 30 and 40 year olds.
@@AZHITW that's extremely rare also.
It's not extremely rare. There are plenty of children with dementia. It's caused by a genetic disorder. Often parents are carriers.
Crying so hard... life just isn't fair ... I'd give anything to make it so no child he'll no person would ever have to deal with this kind of stuff.
I wonder if this isn’t Prion related, as it mimics dementia.
I am sure she has been tested.
@@milkandspice1074 Being “tested” doesn’t always matter. I was tested and told there was nothing wrong with me and after 2 years and many doctors later they found out I have Multiple Myeloma it’s a cancer of the blood.
@@darlalove I hope you get to feeling better✨
@@darlalove I’m so sorry. My son became mysteriously ill in 2012 at age 17. The doctors tested him for everything for weeks. The oncologist was *sure* it wasn’t cancer. Finally I insisted on a bone marrow biopsy. Turned out he had myelodysplastic syndrome. I lost him 4 years later due to complications from his stem cell (bone marrow) transplant. It was so hard to watch him lose his body. But it would have been even harder, maybe, to watch him lose his mental faculties. I had never heard of childhood dementia as an syndrome before. It’s something I definitely want to learn more about.
Such sad news that your son passed. Life isn't fair at all! Not at all. I know that you were a love and comfort for him during his struggle though. He was blessed to have you for a mother. I hope that knowing you did your best and loved him well gives you some peace.
heartbreaking, i hope she can get help and enjoy her life
She has Lafora disease, a rare neurological disorder. During the time this was filmed was she still able to put on her make up and nail polish? This breaks my heart,
Such a beautiful girl. Prayers for all.
I feel so bad for her and her family, I hope there will be a cure one day seeing this is just horrible :(
Thanks for your care. With more awareness and research, treatments and cures will be found. The reason this is so horrible now is that, to date, very little has been done to help kids with dementia.
@@childhooddementiainitiativ4040 I really wish you all the best. I hope more people will help to get a cure cause this is basically a life without even living..
Dementia is one of the worst ways to go. It’s a slow death. It’s sad, but even at her age. She’s as old as me, I’m 18. She should be enjoying life.
That poor young lass at that age their meant to feel invincible
Do you see the chair in the back move by itself twice, at 1:01? I did.
Wind
Dear god, I didn't know such a thing existed. I didn't notice the channel's name and when I get recommended similarly titled videos, they'd mostly be commentaries on the current state of kids and teens thanks to the failings of the education system.
scary how it seems to progress so fast. she was diagnosed 2yrs before the last clip and before that she was just a normal kid. i rlly wish this had a cure tbh
"it scares me" i feel so bad for this poor girl.
What? I never knew kids could get dementia. Thank you for sharing and raising awareness.
Thank you for your care.
This is heartbreaking. I never knew that children could get dementia. Bless her heart.
That's what I said.
I never heard of this. This is so sad that a young women in the prime of her life cannot enjoy it as she would have without this disorder.
Insane. Until moments ago I wouldn’t have considered or believed such a thing possible.
So sorry to see this 😢 beautiful young lady
So incomprehensibly cruel...
Wow lost for words here, God bless
I did not need to cry right now. This is heartbreaking.
It is heartbreaking, isn’t it?
I've experienced her symptom of fear of dying. I got to a point it was hard to remember things and I was thinking, acting, and speaking slowly. I am thankful for God for giving parents who would counsel and listen every night patiently. During those times, I didn't knew what it would mean to be a child of God. Through counseling with our Church planter from the USA, he guided me with God's Word and a book, Victory Over the Darkness. Thought this can help.
God bless that child. I hope she is ok.
There is no denying that everyone has a soul. You stay the same person regardless.
My heart just broke. I didn't know kids could get dementia.
*new fear unlocked*
No but seriously, this is scary. Bless her
May GOD give her & her family peace in their hearts...
Like most people I didn't even know this was possible!!!
I didn't even know that kids could get dementia.
You are definitely not alone in that! Lack of awareness is part of the issue these kids face. The disorders that cause childhood dementia are severely under-researched and families tell us that they struggle to get the healthcare and support they need. So the fact that you now know about it: it’s a massive step and part of positive shifts for kids like Angelina :)
Poor girl, I feel so sorry.
I think my father is in early stages. He's 76.
Sorry to hear that. We hope he’s ok.
Every day when I see videos like these...I get more and more grateful of my life, and what a gift it is to never have to go through something like this. I wish all the best for her family:/
The fact that they’re singing about a mother mourning her daughter’s loss the year before Angelina’s diagnosis is just so eerie. Incredibly unfair. I wish you the best of luck in your research and mission. ❤
The fact that many of us are finding out about childhood dementia because of randomly coming across this RUclips 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.
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 :(
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?
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
"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
@@YuckFoutube-e1zBut so young, they have a whole life ahead of them, It's just sad, honestly.
@@YuckFoutube-e1znot verybody dies when they are 18..
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
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
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.
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.
"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
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 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.
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
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
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.
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 " . 🤷♀️