When Sophia Scott was still a toddler, her parents were told that the life unfolding in front of them would not last in the way they expected. Doctors explained that their daughter had childhood dementia, a rare group of genetic conditions that slowly strip away speech, movement and memory.
What they were not given, her family say, was any sense of how to live with it.
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Sophia, now 14, has Sanfilippo syndrome, a neurodegenerative condition so uncommon that many clinicians never encounter it. Like many children affected by childhood dementia, she developed typically in her early years before a gradual decline began.
“There was no plan,” her father Darren said. “No pathway. You’re told the diagnosis, then you’re on your own.”
A condition few systems recognise
Childhood dementia is not a single illness but an umbrella term covering more than 140 rare metabolic and neurological disorders. Unlike adult dementia, it has no national register, no clear care framework and limited research funding.
Families often spend years seeking answers, with children misdiagnosed or dismissed before the true cause is identified. By the time clarity arrives, valuable time has often been lost.
Sophia’s parents say that absence of understanding shapes every part of daily life, from education and social care to medical support.
“You are constantly explaining your child’s condition to professionals who have never heard of it,” Darren said. “That alone is exhausting.”
Watching abilities fade
In early childhood, Sophia loved swimming, ballet and music. Her parents describe her as energetic and expressive, a child who filled rooms easily.
The losses came slowly. Speech faded first, then mobility, then independence.
“What stays with you are the last things,” Darren said. “The last sentence, the last song. You don’t know at the time that it’s the last.”
Sophia now requires round-the-clock care. Her condition has progressed beyond the point where emerging treatments are likely to help her directly, though clinical trials are beginning to offer cautious hope for younger children diagnosed today.
An overview of how Sanfilippo syndrome is currently diagnosed and managed is set out in the NHS clinical guidance, which reflects both the limits of treatment and the lack of long-term support.
Living with a countdown
Families affected by childhood dementia are often given an estimated life expectancy soon after diagnosis. For Sanfilippo syndrome, that figure is frequently the mid-teens.
“That number never leaves you,” Darren said. “It frames everything. Birthdays. School years. Christmases.”
Sophia will turn 15 next year.
Her parents continue to campaign for better recognition, earlier diagnosis and sustained research funding, not only for their daughter but for the many children whose conditions remain largely invisible.
“These children exist,” Darren said. “They deserve to be seen, and they deserve to be planned for.”
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This story was first reported by Sky News and has been independently written and developed for EyeOnLondon.
[Image Credit | Dementia Hub]
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