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The children as young as FOUR who are forgetting their parents: Moving photos capture the UK's youngest dementia sufferers as they make their last memories with their families

4.5 from 2 votes
Friday, April 20, 2018

Ceridwen Hughes, 49, from Mold, North Wales -whose son Isaac, 11, has Moebius Syndrome - aims to raise awareness of rare conditions through her organisation Same But Different.

She was commissioned by the Dementia Strikes Children Too campaign to capture special moments for the families who are treasuring every moment in the knowledge that their children will eventually not know who they are.

'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,' Ceridwen explained.

'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.

'It was very important to me that whilst I wanted to convey the feeling of loss I also wanted the images to be positive and to capture the everyday lives that the children are currently experiencing.

'They are very much still alive and having very positive experiences with their families.'

Amelia's parents were devastated when her older brother Ollie was diagnosed with Batten Disease when he was four-years-old.

As well as dementia, the genetic disorder of the nervous system causes issues such as seizures and loss of sight and motor skills and most sufferers do not survive beyond their teens or early 20s

As it's a genetic condition, Lucy and Mike knew there was a one in four change Lucy would also have 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,' Lucy recalled.

However, they knew that these milestones would all disappear as Amelia suffered the same degenerative fate as her older brother.

'Ollie can no longer talk, he can no longer walk,' Lucy explained. '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 dependent 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.'

What is childhood dementia?

Between 11 and 17 children are diagnosed with the most common form of childhood dementia in the UK every year.

It is usually caused by Niemann-Pick disease type-C, Batten disease and Mucopolysaccharide diseases.

Early diagnosis is crucial as once damage occurs to the brain it is irreversible, but this can be challenging as the symptoms are often confused with other conditions such as epilepsy.

Niemann-Pick disease

There are three forms of Niemann-Pick Disease: Type A, B and C.

Each type affects the way the body breaks down fat and is caused by a genetic mutation.

Type A, which Purnell has, rapidly affects the brain and usually causes death before the age of three.

Type B affects the liver, spleen and respiratory system and sufferers can survive into adolescence or adulthood.

Type C is the most common. Because of a faulty gene, the body doesn't produce the enzyme needed to break down cholesterol.

Batten Disease

Batten disease, also known as Neuronal Ceroid Lipofuscinoses, is a rare genetically-inherited disease.

It is caused by waste buildup in the cells which creates neurodegnerative effects including blindness, seizures, personality changes, dementia as well as the loss of motor skills and the ability to walk, talk and communicate

There are 14,000 children worldwide that are diagnosed with the incurable disorder.

Mucopolysaccharide diseases

A group of diseases ca deficiency in the body of an enzyme called iduronate sulphate sulphatase.

This enzyme is vital for breaking down long chains of sugar molecules called Mucopolysaccharides (MPS).

Without it, these molecules build up until they reach toxic levels in the body.

Child sufferers are often normal at birth, but soon show developmental delay with skeletal abnormalities, severe learning difficulties and an early death.

According to her mother Claire, Kaycee - who also has Batten disease - is 'a remarkable person who just gets on with it and laughs.'

Kaycee is now confined mostly to a chair or a pram, but still thinks she can do all the things she used to love such as playing in the park or on the trampoline.

'Try telling a little girl who's been able to walk, run around and that, that she can't do it anymore,' Claire said.

'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.'

Claire, George's mother, is not sure how much time she has left with her son who hs Batten disease, 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.'

'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.'

Caleb was diagnosed with Batten disease in December 2013, at the same time as his older sister Ellie Mae who died 18 months later. 

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.

'I had the two of them both unable to walk, both in wheelchairs, both unable to feed themselves, losing their speech,' Lynsey said.

'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.'

'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.'


'Nobody believed me that that there was something seriously wrong with my child,' Mel said. 'It took 18 months to get the genetic testing I'd been asking and asking for.'

After the necessary tests were finally carried out, single mother Mel received the devastating diagnosis in November 2013, that Matilda had childhood dementia and 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.'

Associated Newspapers Ltd

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