Emily is urging wider recognition of childhood dementia after her two-year-old daughter, Leni, was diagnosed with Sanfilippo syndrome last year. The term groups more than 140 conditions, and Emily says greater awareness could strengthen calls for change at government level.
Sanfilippo syndrome is a rare genetic disorder that progressively damages the brain, causing children to lose learned skills such as speech and mobility. Many affected children do not reach adulthood. The MPS Society says symptoms can be treated as they arise, but there is no cure for the underlying disease.
The MPS Society says recognition could improve professionals’ understanding, support, research investment and policy planning. The Department of Health and Social Care says it is working to speed rare-disease diagnoses, improve access to specialist care and treatment, and find ways to slow dementia’s progress. Emily said Leni may be able to join a clinical trial later this year.
