Photographer and founder of Same but Different, Ceridwen Hughes, has been commissioned to capture a series of images on behalf of Portland Communications for 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.
“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 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” explained Ceridwen. “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.
Amelia’s older brother, Ollie was diagnosed with Batten’s Disease at 4 years old. His younger sister has also been diagnosed.
“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, their mother.
“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.”
Caleb was diagnosed with Batten disease, a form of childhood dementia, in December 2013, at the same time as his older sister Ellie Mae, who has since died.
“I had the two of them both unable to walk or feed themselves and 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. 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.”
“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.”
“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.”
“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.”
The poster campaign created by Portland Communications, also photographed by Ceridwen Hughes can be seen on the Childhood Dementia website at www.childhooddementia.co.uk