Valerie Traynor, 34, said: “He was a very active, fun, outgoing and cheerful boy, like most six-year-olds, climbing frames in the park, riding his bike and scooters.” Childhood dementia is rarely heard or talked about. Most people automatically think it’s only found in older people.” When his son, Kayden, struggled to concentrate in school and complained that he had trouble watching TV , Valerie suspected that he might have ADHD (attention deficit hyperactivity disorder).
After taking him to the doctor, “the genetics team got involved because of how quickly [his symptoms were] progress”.
“Me and his father were tested and they found out [Kayden] has juvenile Batten disease,” Valerie revealed.
The rare inherited neurodegenerative disease typically develops between five and 10 years of age, Batten Disease News said.
A buildup of lipofuscin leads to neurological decline, with one of the first signs being visual impairment.
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Vision changes rapidly and can be completely lost in late childhood or adolescence.
Around the same time, just like Kayden, the children begin to have difficulty concentrating and learning new information.
“It was difficult and confusing to understand,” Valerie said. “I didn’t understand. Worst case scenario, we thought he was going blind.”
Kayden was forgetting people’s names, now calling his mother “Val” because he had forgotten how to say mom, and he was repeating himself.
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He also suffers from severe mood swings, “happy for a minute and [then he] burst into tears the next day”.
Valerie, from Edinburgh, Scotland, added: “It can be hard to know that your child doesn’t always know or understand where they are and what’s going on.”
Heartbreakingly, Valerie knows that Kayden – now 13 – will “lose his cognitive and motor skills, his ability to chew and swallow and his ability to walk”.
“The only word I can use for the future is deterioration,” commented Valerie.
Experts from the Batten Disease Family Association have highlighted symptoms that will “inevitably occur” to every child with the disease.
Along with visual impairment, resulting in blindness, there will be seizures, sleep disturbances, decreased speech and language, and swallowing abilities.
There will also be a deterioration of fine motor skills which will result in the loss of mobility.
“Ultimately, the child or young person will become completely dependent on families and caregivers for all their needs,” the experts noted.
Other common symptoms seen are hallucinations, memory loss, and challenging behaviors.
There is currently no cure for the disease, so specialized symptom management and therapy is essential to maintaining a good quality of life.
“I have to deal with what’s going on,” Valerie said. “But you find that once you start taking care of something, something else happens.
“You are never prepared, even if you feel like you are.”
Dementia: 6-year-old boy with debilitating brain disease