Leni's family have a simple ask: save our daughter. They have been campaigning to get her the help she needs and to raise awareness of her condition and other conditions that cause forms of childhood dementia.
When they were approached by author and school teacher, Paula Robertson, they realised there was an opportunity to share Leni's story with a new audience and raise awareness and funds in the process. Brought to life by the beautiful mixed media illustrations of Laila Clark, this book shares a rare journey.
Childhood dementia is a group of more than 145 rare genetic and neurodegenerative disorders, many of them metabolic or lysosomal storage diseases such as MPS III Sanfilippo.
Families consistently report a delayed diagnosis, poor communication and lack of clear terminology, fragmented and poorly coordinated care and emotional, physical and financial strain. Despite the severity of these conditions, childhood dementia remains largely invisible in public awareness, healthcare planning and national policy.
The Saving Leni children’s book, now available on Amazon, aims to bring childhood dementia into the public conversation.
Emily, Leni's mum, writes, "Like most people, we had never heard of childhood dementia until our beautiful daughter Leni was diagnosed with Sanfilippo Syndrome. Despite it being absolutely catastrophic and impacting as many children as childhood cancer, there is very little funding, research, awareness, treatments and support for children with dementia – and we are fighting to change that."
"We wanted to write a book sharing Leni’s story in a way that both adults and children can understand, so that the next generation understands what childhood dementia means. Creating this book was extremely heartbreaking and difficult, and we still can’t read it without tears in our eyes, but it has also given us hope for a better future for Leni and other children with dementia."
To start the conversation of childhood dementia, the MPS Society, alongside other patient organisations in the LSD Collaborative, are joining forces to ask for
Recognition of childhood dementia – Childhood dementia must be named, understood and included in national strategies.
Expanded newborn screening – The UK must modernise its screening programme, so babies are not diagnosed too late.
Continued investment in research – Momentum in rare disease research must be sustained and matched with early diagnosis.
Thanks to the generosity of Leni's family, every penny of her book will go directly to raising the public visibility of childhood dementia in the UK.
Copies of Saving Leni are only available via Amazon.
Little Leni has the most adorable laugh. Like most two year olds, she is curious, funny and full of energy! But Leni has a big struggle ahead of her - behind her beautiful smile, she's fighting a battle with her brain.
From the author of Bearing Up comes an emotive story of courage and hope. Saving Leni explores one incredible family's race against Sanfilippo Syndrome - a form of childhood dementia - and the need for life-saving treatment.
This is more than just a story...this is a call to action!
All profits from the sale of Saving Leni will go directly towards Childhood Dementia UK, an initiative designed to raise vital awareness, support research, and fund treatments for childhood dementia conditions, including Sanfilippo Syndrome.
