Dementia strikes children too
He was first diagnosed with generalized epilepsy, but as his speech and mobility became more limited, Ollie’s parents feared that something more serious was wrong. They were initially told that Ollie was just clumsy, and that he would soon catch up with his peers. But after an MRI scan and genetic testing, Ollie’s parents were given the painful news that their son had a Batten disease, a form of childhood dementia.
As Lucy and Mike started to get their heads round the diagnosis, they learnt that Batten disease is a genetic condition, which all their children had a one-in-four chance of also having. Lucy and Mike have four children altogether – Ollie, his older brothers Danny and Mickey, and his little sister Amelia. They thought about how tough life already was with one child diagnosed with childhood dementia, and had Ollie’s siblings tested, hoping that none of their other children would face the same diagnosis. Danny and Mickey came back clear, but “devastatingly Amelia was also diagnosed with childhood dementia, at the age of just two.”
“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 has now lost his sight, which has been heart-breaking for Lucy and Mike. Soon he will forget what his parents look like, with no way of remembering.
“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.”
While the experience has been difficult for the family, “it’s also made us see life very differently in a positive way because you know we don’t take anything for granted,” Lyndsey tells us.
“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.”
The challenge of caring for two children with childhood dementia has been exacerbated by the lack of support and awareness of the disease.
“Because it’s an extremely rare condition, there aren’t many doctors that actually know about it. Many times we’ve gone into hospitals in emergency situations and we’re telling the doctors what to do, because they don’t even know what childhood dementia is, let alone how to treat a child with it.”
Lucy and Mike have struggled with the lack of support available for the families of children with childhood dementia. “You know there’s not that much support, and a lot of it you have to find yourselves”, Lucy notes. The family has also faced issues with waiting lists for appointments and equipment.
“We waited twelve months for a wheelchair for Ollie and by the time we got it, it wasn’t suitable for him anymore.”
But Ollie’s family do say they have a fantastic amount of support from their friends, their community, and the relationships they have formed with other families in the same situation. Thanks to a local charity in Manchester, Lucy and Mike even watched their son save their city from Darth Vader.
“It was absolutely incredible, and a memory that will stay will us forever because of Ollie’s little face on that day.”
For Ollie and Amelia’s family, it is about seeing that face as much as possible.