8 year old Isaac Hughes, from Mold, north Wales, was born with a neurological condition called Moebius Syndrome. It’s a rare congenital disease which causes paralysis in some of the cranial nerves; especially those that control the muscles of the face, eyes and ears. Affecting his facial muscles and muscle tone, the condition causes the inability to smile and laugh; severely constricting his facial expressions. Realising that very few people are able to see past the physicality of people, such as her son, suffering from such disabilities and diseases, his photographer mother, Ceridwen Hughes, decided to set up a non-profit orgranisation called Same But Different, in an attempt to spread awareness about the existence of a variety of rare diseases, that the majority of the population know little about. Considering there are 350 million children around the world suffering from rare diseases, the herculean task of actually documenting them, let alone normalising how they’re viewed by society is an important one, to say the least.
Using her trained eye, Hughes launched The Rare Project inspired by her son, aiming to change certain prejudiced notions people have regarding those with disabilities. She highlights the stories of the people beyond the condition, and wishes others to explore the same. The Rare Project captures children and adults alike; breaking down the barriers of silence surrounding them and giving parents, like her, a means to understand their child better. Through her work she’s trying to raise awareness and funds for the investigation into rare ailments as well. Ceridwen wants us to get to know Isaac, and many like him, for the fun-loving joker that he is. To see these afflicted children for the people they are, rather than only the conditions they have. Scroll down to see some of the incredible and fun photographs of these kids just being kids, regardless of their situation that’s viewed as pitiable by so many.
All photographs and information about the children are courtesy of Ceridwen Barkley photography and The Rare Project.
Click here for a published guide of the common dental issues seen in patients with Down syndrome, as well as practical advice for caregivers.