This short film - originally published in February 2015 - tells the story of Lewis and his family.
Lewis has Batten disease, a rare neurodegenerative disorder that begins in childhood. Lewis’s mum Samantha talks about Lewis, their struggle for a diagnosis and the impact a rare disease has had on the entire family. Samantha wants to offer advice to other families who are in similar situations, many without a diagnosis.
For more support, these organisations are here to help:
Rare Disease UK
Syndromes Without a Name (SWAN UK)
Genetic Alliance UK
UK Clinical Trials Gateway
Deciphering Developmental Disorders (DDD)