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Rare Disease: A family’s journey

Please note, this film was published in 2015. You can find more up-to-date patient stories by browsing our collection. This short film 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 http://www.raredisease.org.uk Syndromes Without a Name (SWAN UK) http://undiagnosed.org.uk Unique www.rarechromo.org Genetic Alliance UK http://www.geneticalliance.org.uk NHS Choices http://www.nhs.uk UK Clinical Trials Gateway http://www.ukctg.nihr.ac.uk Genomics England http://www.genomicsengland.co.uk Deciphering Developmental Disorders (DDD) http://www.ddduk.org Genomics Education Programme https://www.genomicseducation.hee.nhs.uk