Edinburgh boy diagnosed with dementia after showing same signs as 80-year-old great uncle
| Author | Hannah Phillips |
| Published date | 28 June 2022 |
| Publication title | EdinburghLive (Scotland) |
Worried mum Valerie Traynor, 34, noticed that Kayden's symptoms were similar to those of her 80-year-old uncle George who had been diagnosed with dementia a few years earlier.
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Kayden was eventually diagnosed with Batten's Disease, a rare, genetic, 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.
However 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.
"When you're given a diagnosis and told everything at once, you just think 'what do I do with this and where do I go with this?'.
"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.
"It's hard when he doesn't say my name or when I see the kids he grew up with at school. To see the differences, that can be hard thinking 'where would he be? What would he be like?'.
"Childhood dementia is rarely heard...
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