From her earliest moments, Leni Forrester radiated health and joy. There was no indication that a grave diagnosis would soon cast its shadow over her young life.
The toddler, from Sevenoaks in Kent, appeared to be developing just like any other child – happy, energetic and completely ordinary.
However, after a relative undergoing IVF discovered they were a carrier of Sanfilippo syndrome – an ultra-rare genetic condition often described as childhood dementia – Leni was swept into uncertainty.
At the time, her parents, Emily and Gus Forrester, were trying for another baby and the revelation sent them searching for answers.
Initially, they were reassured: Leni had
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