A boy was diagnosed with childhood dementia when he was just six after his parents noticed he was displaying similar symptoms to his 80-year-old great uncle who was also battling the disease.
Kayden Traynor began having memory loss, seizures before his mobility skills and eyesight began to deteriorate.
Worried mum Valerie Traynor, 34, noticed that Kayden's symptoms were similar to those of her uncle George, who had been diagnosed with dementia a few years earlier.
Kayden was eventually diagnosed with Batten's Disease, a rare genetic and life-limiting form of childhood dementia which also robs children of their eyesight, speech and ability to move.
Now he's 13, Kayden has already forgotten how to say 'mummy', referring to his mum as Val instead and is mostly confined to a wheelchair.
His mum says the family remain positive and are learning to take each day - and each hour - as they come.
Valerie, from Edinburgh, Scotland, said: "When dementia was mentioned, it's hard to describe how you feel.
"I had to process it and break it down. I also had to focus and deal with what was happening then and there.
"It's the same to this day, it's too overwhelming to think of it all as one big disease. I have to deal with what's going on but you find that once you start dealing with something, something else comes along.
"You're never prepared even though you feel like you are.
"He used to be very good with long term memory, dates, birthdays, dog, he loved dogs.
"He was a very active, fun, outgoing, joyful lad as most six-year-olds are, climbing on frames in the park, going on his bike and scooter.
"We noticed quite early on, when he was seven or eight, that there was repetitiveness, he forgets names and only says selected words, the dementia was kicking in.
"The moods, the behaviour was so up and down, he could be happy one minute and burst out crying the next.
"My uncle George was diagnosed with dementia a few years before and when you put my uncle and Kayden in the same room you could see it.
"My uncle [who passed away in 2021] came across as the big kid, excited over the kids' stuff, they'd both be clapping at the same time and giggling but not talking."
She added: "Childhood dementia is rarely heard of or spoke about. Most people automatically think it's just found in elderly.
"It can be hard to know your child doesn't always know or understand where he is and what's going on."
Full time carer Valerie says Kayden was a perfectly healthy child until he was six and teachers would pull her aside to discuss his lack of concentration and he complained about struggling to see the TV.
The mum-of-three suspected he may have ADHD but he was diagnosed in 2016 after tests were carried out to find out why he couldn't see through his right eye.
Valerie said: "The genetics team got involved because of how fast it was progressing. Myself and his dad were tested and they discovered he has juvenile Batten's Disease.
"It was hard and confusing to take in, I didn't understand it. Worst case scenario we thought he was going blind.
"He goes backwards with everything. He'll lose his cognitive and motor skills, the ability to chew and swallow and his walking ability.
"The only word I can use for the future is deterioration. It depends on his journey and every child's journey is different.
"It's the not knowing, they can't say. You've got to deal with things as they arrive."
