A photographic exhibition at Chester Zoo this week showcases the personalities of young people and children with rare diseases.

Same but Different, a not for profit organisation, launched The Rare Project at Chester Zoo on Saturday and the exhibition continues until March 4.

Photographer and founder of Same but Different Ceridwen Hughes from Mold has worked with families over the last 12 months to build a gallery of images that capture the person behind the rare condition.

Ceridwen’s son Isaac has the rare genetic disease Moebius, which results in paralysis of facial nerves. While his family could easily see changes in his expressions others were unable to, let alone capture them in photographs. so Ceridwen sought to capture his personality herself.

On camera

Alex Harwood is another of the exhibition’s stars. She has Leigh’s disease a condition of the central nervous system which causes her severe pain at times and leaves her very fatigued.

Despite her condition Alex doesn’t let it stop her from travelling to Florida to visit Disneyworld and her favourite characters Mickey, Minnie and Jimini Cricket.

Matthew Hogg has Crouzon syndrome, a condition where skull bones fuse prematurely. He loves football and hopes to play for Real Madrid or Manchester United.

Rare Disease Day

The chairman of RDUK Alastair Kent said at a Senedd reception marking Rare Disease Day on February 29: “The pictures of children were works of art in their own right, but they also captured the warmth and the love that they both experienced and gave back, notwithstanding the severe and complex difficulties and challenges they and their families face.”

The exhibition at Chester Zoo was launched in collaboration with Climb, a Crewe based charity that supports those with inherited metabolic diseases.

Families who have taken part in the project were invited to attend the launch along with guests including Sheriff of Chester Alex Black.

Executive director of Climb Lindsay Weaver said: “Climb is committed to raising awareness of Inherited Metabolic Diseases and providing families and patients with opportunities to tell their stories in new and creative ways. That’s why we are thrilled to be working in partnership with Same but Different and looking forward to taking The Rare Project forward.”

Other organisations supporting this project include Rare Disease UK, Genetic Alliance, Big Lottery Wales and Sobi Ltd (a healthcare company dedicated to rare diseases).