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The Rare Project: woman photographs children with rare disabilities

Ceridwen Hughes knows what it is like to deal with an extremely rare medical condition.

Her son Isaac was diagnosed with Moebius Syndrome when he was eight months old, and Hughes soon learned that it wasn’t just dealing with the diagnosis that was difficult.

“Because the condition means that he looks slightly different, people have always made assumptions about his abilities,” Hughes writes on boredpanda.

“These frustrations led to me setting up a community organization called Same but Different.”

Hughes, who is a photographer, has set about capturing “the real person behind the condition” by taking beautiful pictures and displaying them alongside the person’s story.

Hughes’ work with people diagnosed with rare diseases, called the Rare Project, aims to break down barriers and help people see more than a medical condition.

One mother, whose son took part in the project, said: “We are very supportive of the ‘Rare Project’.

“It is good for society to know about disabilities, to understand that these children look different or behave in a bizarre manner, but they are still children and deserve the same opportunities as other children.”

Click through for some of Hughes’ stunning images; you can learn more about the Rare Project here

“Elisabeth loves to dance and has recently started ballet lessons.”

“Tomos dreams of the day he can play football for Manchester United.”

“Matthew is totally in love with football, it’s his passion.”

“Heidi enjoys going to the cinema, eating out… dressing up as Disney princesses. She absolutely adores animals and going on family days out.”

“April is a brave and determined little character, so friendly and quirky, she charms everyone who meets her.”

“Grace loves everything to do with Disney, especially Mickey.”

“Faith is an affectionate, fun, chatty, loving, warm 14-year-old with a great sense of humour.”

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