Sadly Angelina was born with 1 (Lafora disease) of the 100+ genetic conditions that cause childhood dementia. For kids with these conditions, their dementia will progress no matter what their diet is. Of course, healthy diet is good for everyone, including kids with dementia, but their conditions are not the result of lifestyle factors.

Hi, thanks for your question. Sadly all children with dementia die, around half before the age of 10. Like adult dementia, childhood dementia is caused by a number of different conditions. For kids, there are over 100 of these conditions. They are all genetic and kids are born with them. There’s more information under our video description if you’d like to learn more.

@childhooddementiainitiativ4040 didn't really answer the question about the cause of death. Is it pneumonia? That's what it says seniors with it die from. But children shouldn't die from pneumonia as their organs, immune system, and white blood cell count is better than that of a senior citizen. So again, why are they dying inevitably from childhood dementia specifically?

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.

Thank you so much for your comment and interest. You are right: Lafora disease is sadly the cause of Angelina's childhood dementia and is one of the 100+ conditions that cause dementia in childhood. The lack of research and action to date is primarily due to a traditional focus on each, individually rare disorder. It's been very difficult for researchers to gain funding or traction with this approach, so difficult that there are some disorders for which there has never been a single clinical trial. Bringing all of the childhood dementia conditions together, however, drives collaboration and economies of scale in research for all of the disorders. For instance, it encourages research on multiple disorders at once, shared infrastructure and more research funding. It also generates greater awareness and improved support for families who all have children experiencing dementia, but have been largely left without the care and support they need. This collective approach was / is used for cancer which is essentially the same: a singular name for a group of diseases. The result for childhood cancers has been really positive: survival rates have improved significantly in high income countries. So of course, as you say, Lafora disease needs more research. Awareness and action for childhood dementia as a collective is key to making that happen.

@childhooddementiainitiativ4040 I totes get that and 100% support grouping all the conditions that cause CH-D togeather so all of them get researched into. That's an absolutely fking brilliant idea! There would still need to be specific researchers who specialize in each unique condition. As they are all so drastically different a fix for one isnt a fix for all. But if we could actually manage to get together an actual dedicated team and put them to work in a facility all dedicated twoards all CH-D causing conditions. Then each of those specialists would actually be making a stable income and could finally justify actually do the research and testing in the conditions they specialize in best. As for the lable, I would maybe change it then to" this what a childhood Dementia causing illness looks like." Or something... I would still recommend actually getting the name of the source condition out there, so it peeks the interests of people who are orientated towards this kind of research. but absolutely still promote for the grouping of all CH-D causing conditions. This plan should be considered for rare skin conditions too. Like Dystrophic Epidermolysis Bullosa... which is extremely fking rare, but absolutely devestating to have to live with... but even though Johhny Kennedy put a movie out to spread awareness on his skin condition before he took himself out... nothing happened, no research on it was made since... it's just been sitting on A back file cabinet collecting dust. And now there's a new boy... crazily also named John, with this skin condition.... and there's been absolutely no progress... he's going through what Johnny K. Had to all over again with absolutely no changes in the way they handle him.

Why?

why???

It can help fund research and medical support

Finding research to find a curr

Funding research I assume

cant be this dumb?

Hi, thanks for your question. Sadly all children with dementia die, around half before the age of 10. Like adult dementia, childhood dementia is caused by a number of different conditions. For kids, there are over 100 of these conditions. They are all genetic and kids are born with them. There’s more information under our video description if you’d like to learn more.

she has no health, to begin with...

You clearly know nothing about Dementia... If she's even alive today, she probably can't think, speak or even move

Yes. Clinicians and researchers are clear about the causes: Angelina has one of the 100+ genetic conditions that cause dementia in childhood. Kids are born with these conditions. They are severely under-researched and have attracted little attention or action until now.

When do u make up cures? What does that mean?

@@jadeonyx9349i think he’s an anti vaxxer

The brain progressively stops working. It's cognitive functions first, and it ends with the basic living functions.

the brain stops being able to handle the basic body functions.

Thanks for your question. 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.

Alzheimer's is a form of dementia.

Oh, you’re a scientist that knows that for sure? You are aware, there are a lot of diseases that didn’t have cures until people donated money and scientists created them, correct?

It's not only about cure. It can be to help them for the time left with living with such a condition. It requires care.