Saving Leni: One Mum's Fight Against Childhood Dementia | Sanfilippo Syndrome Awareness | Emily

In this emotional and eye-opening episode, we sit down with Emily, mum to two-and-a-half-year-old Leni, who has been diagnosed with Sanfilippo Syndrome a rare and severe form of childhood dementia affecting 1 in 200,000 children. Emily shares their journey from diagnosis to advocacy, and why early detection could change everything. We cover: What Sanfilippo syndrome is and how it progresses Why it's so often misdiagnosed as autism or ADHD? The importance of early diagnosis and newborn screening Clinical trials that could offer a life-changing cure Why gene therapy at £1M makes more financial sense than £8M in lifetime care? ⏱️ Timestamps: 0:00 – Introduction 1:07 – What is Sanfilippo syndrome? 2:33 – How the condition progresses 4:02 – Why early diagnosis is crucial 6:17 – The medical system's gaps 32:51 – Leonie's life expectancy 34:14 – The case for newborn screening 36:30 – The cost of care vs. the cost of a cure This conversation will break your heart and inspire you in equal measure. Please share to help raise awareness. 💛 📲 Follow Leonie's journey on Instagram: @saving_leni Sponsored by B and W https://www.blackandwhitebridging.co.uk/