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Photographs reveal people behind rare illnesses

BBC News By Catherine Evans image captionMaddox has a rare genetic disorder which is a perinatal form of hypophosphatasia A mother whose three children died of the same condition, a young man facing the worst illness of all time and a teenager who lost her hair feature in an exhibition to challenge concepts of beauty. Beauty of Rare was created by north Wales-based charity Same but Different. Each photograph tells a story about each person s identity and their experience of a rare illness. A virtual exhibition has been launched on the charity s website. Photographer and charity founder Ceridwen Hughes said: Each scene was created around the individual and their condition with small details that, on first glance may, not make sense but on reading the narrative will become clearer.

Mum opens up on losing 3 kids to killer disease so rare only 110 people have ever had it

Mum opens up on losing 3 kids to killer disease so rare only 110 people have ever had it Lucy, Hannah and Samuel Mathieson all tragically died from Niemann-Pick disease type C, a rare disease that just 110 people in the country have been diagnosed with Updated Toni and Stewart Mathieson s daughter Lucy died at the age of four after suffering with Niemann-Pick type C The Daily Star s FREE newsletter is spectacular! Sign up today for the best stories straight to your inboxInvalid EmailSomething went wrong, please try again later. Sign up today! When you subscribe we will use the information you provide to send you these newsletters. Your information will be used in accordance with ourPrivacy Notice.

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