Bored Panda works better on our iPhone app
Continue in app Continue in browser

BoredPanda Add post form topAdd Post Search
Tooltip close

The Bored Panda iOS app is live! Fight boredom with iPhones and iPads here.

I Show The Painful Realities Of Children With Dementia And How Their Parents Cope With It
User submission
2.4K
78.7K

I Show The Painful Realities Of Children With Dementia And How Their Parents Cope With It

ADVERTISEMENT

I was asked to create a series of images that highlight childhood dementia because it is something that very few people even know exists. We have all heard of the devastating effect of dementia in adults but can you imagine the impact it has on families when young children are affected.

This campaign presented a series of challenges not least that very few people know that childhood dementia even exists. It was very important to me that whilst I wanted to convey the feeling of loss, each child in the project has a life limiting condition, I also wanted the images to be positive and to capture the everyday lives that the children are currently experiencing, i.e. they are very much still alive and having very positive experiences with their families. Childhood memories are so brief for those affected by conditions such as Niemann Pick and Battens Disease that each and every one has to be treasured. Simple things such as baking, reading a book with their parent or even playing in a ball pool takes on that extra significance. Childhood dementia does not only rob the child of their memories it also slowly takes away those all important relationships and it is devastating for those affected and their families.

The children in this project will all experience childhood dementia due to their rare disease and as such their families recognise the importance of each and every precious moment that they share.

These images were created to complement a poster campaign, for which I also photographed the children, for Portland Communications as part of their ‘Dementia strikes children too campaign’. It aims to raise awareness of childhood dementia, drive for better clinical education of this group of diseases, and put in place the systems and tools for earlier diagnosis. You can learn more about each child and the impact of childhood dementia on the campaign website at www.childhooddementia.co.uk or visit the Same but Different website for more information.

ADVERTISEMENT

More info: samebutdifferentcic.org.uk

Amelia

Amelia’s older brother, Ollie was diagnosed with Batten’s Disease at 4 years old and as it is a genetic condition it meant their other three children had a 1 in 4 chance of having the condition.
“At the time of her diagnosis, Amelia was still a perfectly healthy little girl. She was running around, she knew how to walk and talk, she was potty trained,” says Lucy. But as Lucy and Mike knew all too well, these milestones could no longer be taken for granted. Over time, Amelia would suffer the same degenerative fate as her older brother.

“Ollie can no longer talk, he can no longer walk. It’s absolutely devastating to see our little boy who used to love running round, playing football, climbing with his brothers, just lose those abilities. “We’ve had to watch one child lose his ability to do absolutely everything and he’s now dependant on us for every one of his needs, and now we’re having to go through that again with Amelia. You know every smile and every little thing that Ollie and Amelia and our other two children do, it just means so much more now because we know that everything could be the last.”

With thanks to Rachael at the Northern School of Ballet for making Amelia’s dreams come true.

ADVERTISEMENT

George

“I think from a Mum’s perspective it’s just unfathomable to accept that you’re going to lose your little boy. I’m still trying to find an answer to that challenge.”

Claire, George’s mum, is not sure how much time she has left with him, which has made her determined to cherish every moment, and to make every minute count. After they got the diagnosis, Claire and George put together a “bucket and spade list”, of all the different activities and places they wanted to visit.

“The result of that was a huge collection of memories that we have now from last year, to remember and enjoy when we have bad days.”

Matilda

“Nobody believed me that that there was something seriously wrong with my child. It took 18 months to get the genetic testing I’d been asking and asking for.” After the necessary tests were finally carried out, Mel received the devastating diagnosis in November 2013, that Matilda was terminally ill.

“She was talking, smiling, into everything. She could eat. She had a normal life. I’d do anything to get that back, but unfortunately it’s not to be. My little girl needs me. You shouldn’t have to be fighting to get the syringes, or the right medication. You just get lost and you have to fight constantly to get things put in place.”

ADVERTISEMENT

Kaycee

ADVERTISEMENT

“Kaycee’s a remarkable person,” say’s her mum Claire, “who just gets on with it and laughs. Try telling a little girl who’s been able to walk, run around and that, that she can’t do it anymore.”

“She can’t tell you if she’s got toothache, if she’s got bellyache. You’ve just got to guess, and hope for the best.”

“We go on holiday, we’ve got a caravan and we’re going to Paris in April. It’s just about keeping Kaycee giggling. The more Kaycee giggles, the happier we are.”

Caleb

Caleb was diagnosed with Batten disease, a form of childhood dementia, in December 2013, at the same time as his older sister Ellie Mae.

While his condition has deteriorated, requiring 24-hour care from his mum Lynsey, Caleb has since turned seven, and continues to enjoy reading stories with his mum. But Ellie Mae passed away in 2015, just 18 months after her diagnosis.

“I had the two of them both unable to walk, both in wheelchairs, both unable to feed themselves, losing their speech. I think emotionally it’s just very difficult not being able to fix it, because that’s automatically just what you want to do, and realising that there is no fixing it.”

ADVERTISEMENT

“I don’t plan ahead at all because the future is not at all assured. With Ellie Mae, she was relatively healthy, and then she declined very quickly over just two or three months. And then we lost her. Things that I used to worry about and stress about I don’t anymore because all I care about is that my child is happy and as healthy as he can be.”

79Kviews

Share on Facebook
You May Like
Popular on Bored Panda
Add your comment
Add photo comments
POST
kristelbijnen avatar
Kristel
Community Member
5 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Thank you for taking on this project! The awareness is so important! I can not fathom how such news and living with it would be. I can try to imagine, but as a stranger, you can not see ALL the (tiny and big) daily struggles that come with it. Just a fraction. It is very sad, but seeing the smiles on their faces is precious! And will become precious memories during and after the parents lose their child. I think that I would take many pictures and videos of them, to watch back during their life and after their passing. To keep the memories alive as much as possible. Though not constantly, because that would take away the joy of these moments together with your child. Again, thank you for making this project and raising awareness for this not so familiar disease which is devastating. I hope this among other things will raise money for research and earlier diagnoses, and hopefully more/better treatment for side affects for all children (and families) affected.

ceri_1 avatar
ca17940 avatar
Charlotte Ayers
Community Member
5 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Such bittersweet photographs. The color contrast you used is so poignant.

gprepodnik avatar
MN Free Spirit
Community Member
5 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

wow as a mum I CANNOT imagine the strength these families have, to know that chances are more than one of your children will lose all that makes a childhood great. I too really have now words except thank you for bringing this the worlds attention.

natalie_blenkhorn avatar
Natalia Brown
Community Member
5 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

I watched my grandmother suffer from dementia, it was heart breaking, I can't begin to imagine how absolutely devastating it must be to see your child suffer like that.

nadine-mezher avatar
Nadine
Community Member
5 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Loosing a child must be the most heartbreaking feeling in the universe, let alone loosing him in this way. The worst must be not being able to communicate with him/her. Thank you for sharing this. These families are extremely brave and these kids are so loved

ht8nkgmgxp avatar
Inash
Community Member
1 year ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

These parents are the living proof for Angels on earth.. I lost my grand dad to dementia, It's heartbreaking to know that even children can be victims too ..Thank you for enlightening us..

tookangaro avatar
Jim Kang
Community Member
5 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Cannot express the depth of sadness this brings to my heart.

bcgrote avatar
Brandy Grote
Community Member
1 year ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Dad just died from dementia, 5 years after diagnosis. It was SO hard. I could not imagine a sweet child going thru this. How terrible.

abdk333 avatar
K Witmer
Community Member
1 year ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

What I really have a hard time understanding is why anyone would have more children knowing the odds are not in their favor and their children will absolutely suffer. It all seems so selfish and unnecessary. Take care of the child you have that is suffering before making another child be born into even more suffering. They did not ask to be born. Knowingly doing this is beyond my understanding. And I don't mean by mistake or unknowingly. I mean a deliberate decision to bring a child into the world knowing they have a 1 in 4 chance of suffering a horrible disease that will limit their lives and understanding to be put at the mercy of others their entire lives while having to practically live in a hospital. I really don't understand

nadja_lambacher avatar
Nadja Lambacher
Community Member
1 year ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

It seems all their children had already been born and they had no idea until the oldest developed symptoms.

Load More Replies...
lorrierothstein avatar
Lorrie Rothstein
Community Member
1 year ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

I never heard of this till now. I couldn't even imagine the pain these families have

3rainbow avatar
EJN
Community Member
1 year ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

As someone who has lost a husband to early onset dementia, I know what the caring is all about and how difficult it is to watch a loved one disappear into themselves. It must be even worse when the disease takes a child. As everyone noted, it's the small things in daily life that they still enjoy that become the focus for not only the one with the disease but the caregivers too. My heart is with all of these mothers.

circular-motion avatar
Mer☕️🧭☕️
Community Member
1 year ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Thank you - I didn't know these diseases even existed. Love the beautiful portraits of the kids - they're honest, not hiding the problem, but allowing the kids' bright light to show. I wish they could keep that brightness forever.

sharonchance avatar
Chancey
Community Member
1 year ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Thank you so much for bringing this to light. I have never heard of childhood dementia. I am a full time caretaker for my 82 year old mother who has dementia. I cannot even imagine a child with this condition.

sooploosh avatar
Sooploosh MacSchnibble
Community Member
1 year ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

My aunt's grandmother had childhood dementia but in her late 80s instead of childhood.

aamna_shah avatar
Aamna Shah
Community Member
1 year ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Nothing I say can diminish the pain of these parents who've endured such heavy odds but I sincerely wish them a lifetime of health, healing and joy. I hope we can soon find a cure for dementia. Thank you for this project. It successfully raised awareness about an illness I had no clue could affect children as well.

fmc avatar
Niall Mac Iomera
Community Member
1 year ago (edited) DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

How exactly do these photos she the "painful realities" of these kids?

albertfisk avatar
Albert Fisk
Community Member
1 year ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

100 bucks say theyre normal when grown up, thats usually the case with child "diagnoses".

daniellosinger avatar
Daniel Losinger
Community Member
5 years ago

This comment is hidden. Click here to view.

Obviously this was your first attempt at using Photoshop.

utadohl avatar
Uta Dohlenburg
Community Member
5 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

First of all: what are you on about? I'm a designer and see nothing wrong with these images, technically. And secondly: why would it matter if they weren't perfect? That wouldn't take anything away from showing about living with this rare disease.

Load More Replies...
kristelbijnen avatar
Kristel
Community Member
5 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Thank you for taking on this project! The awareness is so important! I can not fathom how such news and living with it would be. I can try to imagine, but as a stranger, you can not see ALL the (tiny and big) daily struggles that come with it. Just a fraction. It is very sad, but seeing the smiles on their faces is precious! And will become precious memories during and after the parents lose their child. I think that I would take many pictures and videos of them, to watch back during their life and after their passing. To keep the memories alive as much as possible. Though not constantly, because that would take away the joy of these moments together with your child. Again, thank you for making this project and raising awareness for this not so familiar disease which is devastating. I hope this among other things will raise money for research and earlier diagnoses, and hopefully more/better treatment for side affects for all children (and families) affected.

ceri_1 avatar
ca17940 avatar
Charlotte Ayers
Community Member
5 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Such bittersweet photographs. The color contrast you used is so poignant.

gprepodnik avatar
MN Free Spirit
Community Member
5 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

wow as a mum I CANNOT imagine the strength these families have, to know that chances are more than one of your children will lose all that makes a childhood great. I too really have now words except thank you for bringing this the worlds attention.

natalie_blenkhorn avatar
Natalia Brown
Community Member
5 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

I watched my grandmother suffer from dementia, it was heart breaking, I can't begin to imagine how absolutely devastating it must be to see your child suffer like that.

nadine-mezher avatar
Nadine
Community Member
5 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Loosing a child must be the most heartbreaking feeling in the universe, let alone loosing him in this way. The worst must be not being able to communicate with him/her. Thank you for sharing this. These families are extremely brave and these kids are so loved

ht8nkgmgxp avatar
Inash
Community Member
1 year ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

These parents are the living proof for Angels on earth.. I lost my grand dad to dementia, It's heartbreaking to know that even children can be victims too ..Thank you for enlightening us..

tookangaro avatar
Jim Kang
Community Member
5 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Cannot express the depth of sadness this brings to my heart.

bcgrote avatar
Brandy Grote
Community Member
1 year ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Dad just died from dementia, 5 years after diagnosis. It was SO hard. I could not imagine a sweet child going thru this. How terrible.

abdk333 avatar
K Witmer
Community Member
1 year ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

What I really have a hard time understanding is why anyone would have more children knowing the odds are not in their favor and their children will absolutely suffer. It all seems so selfish and unnecessary. Take care of the child you have that is suffering before making another child be born into even more suffering. They did not ask to be born. Knowingly doing this is beyond my understanding. And I don't mean by mistake or unknowingly. I mean a deliberate decision to bring a child into the world knowing they have a 1 in 4 chance of suffering a horrible disease that will limit their lives and understanding to be put at the mercy of others their entire lives while having to practically live in a hospital. I really don't understand

nadja_lambacher avatar
Nadja Lambacher
Community Member
1 year ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

It seems all their children had already been born and they had no idea until the oldest developed symptoms.

Load More Replies...
lorrierothstein avatar
Lorrie Rothstein
Community Member
1 year ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

I never heard of this till now. I couldn't even imagine the pain these families have

3rainbow avatar
EJN
Community Member
1 year ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

As someone who has lost a husband to early onset dementia, I know what the caring is all about and how difficult it is to watch a loved one disappear into themselves. It must be even worse when the disease takes a child. As everyone noted, it's the small things in daily life that they still enjoy that become the focus for not only the one with the disease but the caregivers too. My heart is with all of these mothers.

circular-motion avatar
Mer☕️🧭☕️
Community Member
1 year ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Thank you - I didn't know these diseases even existed. Love the beautiful portraits of the kids - they're honest, not hiding the problem, but allowing the kids' bright light to show. I wish they could keep that brightness forever.

sharonchance avatar
Chancey
Community Member
1 year ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Thank you so much for bringing this to light. I have never heard of childhood dementia. I am a full time caretaker for my 82 year old mother who has dementia. I cannot even imagine a child with this condition.

sooploosh avatar
Sooploosh MacSchnibble
Community Member
1 year ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

My aunt's grandmother had childhood dementia but in her late 80s instead of childhood.

aamna_shah avatar
Aamna Shah
Community Member
1 year ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

Nothing I say can diminish the pain of these parents who've endured such heavy odds but I sincerely wish them a lifetime of health, healing and joy. I hope we can soon find a cure for dementia. Thank you for this project. It successfully raised awareness about an illness I had no clue could affect children as well.

fmc avatar
Niall Mac Iomera
Community Member
1 year ago (edited) DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

How exactly do these photos she the "painful realities" of these kids?

albertfisk avatar
Albert Fisk
Community Member
1 year ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

100 bucks say theyre normal when grown up, thats usually the case with child "diagnoses".

daniellosinger avatar
Daniel Losinger
Community Member
5 years ago

This comment is hidden. Click here to view.

Obviously this was your first attempt at using Photoshop.

utadohl avatar
Uta Dohlenburg
Community Member
5 years ago DotsCreated by potrace 1.15, written by Peter Selinger 2001-2017

First of all: what are you on about? I'm a designer and see nothing wrong with these images, technically. And secondly: why would it matter if they weren't perfect? That wouldn't take anything away from showing about living with this rare disease.

Load More Replies...
Popular on Bored Panda
Trending on Bored Panda
Also on Bored Panda