Family stories

Here you can watch films of NP-C patients and their families talk about their experiences of living with NP-C.

The journey to diagnosis and treatment can be lengthy and challenging due to the wide variation in the type and timing of symptoms of NP-C. Some patients and their families have kindly shared their experiences including how they cope and find solutions to everyday challenges.

Hollie and Annie's Stories

Hollie is a bright and bubbly four year old girl living with NP-C. In the film, her mother Helen talks about the difficulties experienced in gaining a diagnosis of NP-C for Hollie. She highlights how invaluable support has been to help the family come to terms with Hollie’s illness and how important it will continue to be as they look towards the future.

Annie is a vibrant and creative fourteen year old girl. Her mother Kait tells us about her experience of caring for her daughter. She discusses the neurological symptoms of NP-C that the family has to cope with on a daily basis and how adaptations are a constant feature of family, home and school life as Annie’s symptoms progress.