Dementia strikes children too
“Kaycee’s a remarkable person,” Claire says, “who just gets on with it and laughs.”
Kaycee was diagnosed with Batten disease, a form of childhood dementia in 2016. Her parents initially noticed that Kaycee had little eyelid flickers, that she was falling over frequently, that her speech wasn’t developing at the same rate as her older siblings. But it wasn’t until after a year of misdiagnosis, of “about eight different blood tests being sent to all different hospitals around the world”, that they were given the heart-breaking news that their youngest child had a terminal illness.
She used to love to play in the park and on the trampoline, but nowadays Kaycee is confined mostly to either a chair or a pram. What has been most heart-breaking for Claire and Greg is trying to explain this to their daughter, who still thinks she can do all the things she used to love.
“Try telling a little girl who’s been able to walk, run around and that, that she can’t do it anymore.”
“It’s coming into Christmas, and our Tamsin, who’s nine, she’s in a nativity play, and Kaycee can’t do things like that.”
Claire and Greg must balance the responsibilities of looking after all six children, with all the little tasks adding up to a lot of hard work.
“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.”
While there are many milestones that Kaycee will never reach, this has made Claire and Greg celebrate different ones instead. Little, daily moments that pass by for most people without recognising how special they are.
For Claire and Greg, the support from Kaycee’s brothers and sisters has been essential. Tyler was only 14 when his baby sister was diagnosed with childhood dementia, and since then he has been a rock to both Kaycee and her parents. Greg notes that, “Kaycee might not be able to talk to you as much as you want, but as soon as we say Tyler’s coming or we’re picking Tyler up, the joy on her face is absolutely remarkable.”
And despite Kaycee’s ongoing disease, the family of eight continue to see themselves as a normal and a happy one.
“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.”