Home / Health / Childhood Dementia: A Rare Disease, A Powerful Voice
Childhood Dementia: A Rare Disease, A Powerful Voice
26 Sep
Summary
- A mother advocates for greater recognition of childhood dementia after her daughter's diagnosis.
- Sanfilippo Syndrome is one of over 140 conditions causing childhood dementia.
- The family has released a book, 'Saving Leni,' to share their daughter's story.
A mother from Sevenoaks, Kent, is advocating for greater recognition of childhood dementia, a classification for over 140 rare conditions, following her two-year-old daughter Leni's diagnosis with Sanfilippo Syndrome. This genetic disorder progressively damages the brain, leading to a loss of learned skills like speech and mobility, with many affected children not reaching adulthood. The DHSC stated it is actively working on new treatments and diagnostic improvements for dementia.
Emily highlighted that grouping these rare diseases amplifies advocacy efforts, aiming for nationwide governmental change rather than isolated treatments. She noted that while Leni currently appears like any other two-year-old, regression typically begins around age three, making the situation intensely painful given their potential losses. The family has released a book, 'Saving Leni,' detailing their journey.
The MPS Society's interim chief executive, Sophie Thomas, stated that increased recognition would improve professional understanding, access to support, research investment, and policy considerations for childhood dementia. A DHSC spokesperson acknowledged the devastating impact of neurodegenerative conditions like Sanfilippo syndrome, assuring progress in faster diagnoses, specialist care, and treatment for rare diseases, with ongoing efforts to understand and slow dementia progression. Leni may participate in a clinical trial later this year, offering hope.
