Hi, my name is Emmie, im the Deputy manager and Sendco at Kids planet Sevenoaks and I’m helping organise fundraising for a very special little girl connected to our nursery community who has been diagnosed with Sanfilippo Syndrome, a rare form of childhood dementia.

Sanfilippo Syndrome is a devastating genetic condition that slowly takes away a child’s ability to speak, walk and eventually even recognise their loved ones. It is often described as childhood dementia, and sadly many children with this condition do not make it into adulthood.

Leni and her family are now facing a journey no family should ever have to go through. While they focus on making precious memories and giving her the best quality of life possible, we want to do everything we can as a community to support them.

We are currently organising a Charity Family Fun Day on 30th May in Sevenoaks to raise funds and awareness, but we also wanted to create this page so people who cannot attend can still support the cause.

Every donation, no matter how big or small, will help support the family and contribute towards vital research and treatmeant and provide support for children affected by Sanfilippo Syndrome.

If you’re unable to donate, please consider sharing this page to help us spread awareness of this rare condition. The more people who see it, the more chance we have of making a difference.

Thank you so much for taking the time to read her story and for supporting this incredible little girl and her family.