Poignant Photographs Of Children With Rare Diseases By Ceridwen Hughes - Homegrown

Poignant Photographs Of Children With Rare Diseases By Ceridwen Hughes

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.

Katja, like Isaac, was born with Moebius Syndrome. She is unable to smile, frown, blink and suffers some difficulties with her hearing. She isn’t able to move her eyes from left to right, which affects her balance and coordination, and she suffers from muscle weakness causing scoliosis of the spine. But this doesn’t hold her back; a green belt in karate, a grade 2 piano player, an avid reader, who spends a lot of time writing short stories herself. Her family and friends are extremely proud of her and everything she has achieved, with admirable strength and determination.
Katja, like Isaac, was born with Moebius Syndrome. She is unable to smile, frown, blink and suffers some difficulties with her hearing. She isn’t able to move her eyes from left to right, which affects her balance and coordination, and she suffers from muscle weakness causing scoliosis of the spine. But this doesn’t hold her back; a green belt in karate, a grade 2 piano player, an avid reader, who spends a lot of time writing short stories herself. Her family and friends are extremely proud of her and everything she has achieved, with admirable strength and determination.
Faith is an affectionate, fun, chatty, loving, warm 14 year old with a great sense of humour. She was born with a small deletion on the short arm of chromosome 11, known as WAGR syndrome.This genetic problem caused her to have the condition Aniridia amongst other complications; glaucoma, cataracts and nystagmus (wobbly eyes) all recognized medically as severely visually impaired / blind.The chromosome deletion also caused her to develop a tumor on her kidneys at 6 months old where she underwent chemotherapy and in the end had part of her kidney removed. Despite health struggles from an early age, like most teenagers, Faith loves music, audiobooks, games, television and cinema. She is very passionate (borderline obsessive) about who and what she likes. She loves attending music concerts and loves to dance!
Faith is an affectionate, fun, chatty, loving, warm 14 year old with a great sense of humour. She was born with a small deletion on the short arm of chromosome 11, known as WAGR syndrome.This genetic problem caused her to have the condition Aniridia amongst other complications; glaucoma, cataracts and nystagmus (wobbly eyes) all recognized medically as severely visually impaired / blind.The chromosome deletion also caused her to develop a tumor on her kidneys at 6 months old where she underwent chemotherapy and in the end had part of her kidney removed. Despite health struggles from an early age, like most teenagers, Faith loves music, audiobooks, games, television and cinema. She is very passionate (borderline obsessive) about who and what she likes. She loves attending music concerts and loves to dance!
Heidi suffers from the extremely rare Ehlers Danlos syndrome type 3. It’s a collagen disorder that makes her joints to partial sublux (dislocate) and to fully dislocate. She also has low muscle tone which causes her to be very unsteady on her feet, it also causes tiredness & severe chronic pain around the joints. The condition also causes gastrointestinal problems. Despite her condition, Heidi enjoys going to the cinema and eating out. She loves putting makeup on, having her nails painted and dressing up as Disney princesses. Apart from being absolutely adorable herself, she adores animals, enjoys swimming & horse riding, and loves going to cheerleading with her friends.
Heidi suffers from the extremely rare Ehlers Danlos syndrome type 3. It’s a collagen disorder that makes her joints to partial sublux (dislocate) and to fully dislocate. She also has low muscle tone which causes her to be very unsteady on her feet, it also causes tiredness & severe chronic pain around the joints. The condition also causes gastrointestinal problems. Despite her condition, Heidi enjoys going to the cinema and eating out. She loves putting makeup on, having her nails painted and dressing up as Disney princesses. Apart from being absolutely adorable herself, she adores animals, enjoys swimming & horse riding, and loves going to cheerleading with her friends.
 This cutie is Isabel, who was diagnosed with HSV encephalitis when she was a little over a year old. She suffered a stroke as a result of the encephalitis, and has been left with extensive brain injury, which has left her permanently disabled. She suffers with multi focal epilepsy, hemiplegia with her left side being weaker, hearing impairment, auditory processing disorder, communication difficulty, developmental delay and has also been diagnosed with autism. Isabel is non-verbal, but as no problem getting whatever she wants, namely chocolate milkshakes, fried egg buttys and her favourite snuggly.
This cutie is Isabel, who was diagnosed with HSV encephalitis when she was a little over a year old. She suffered a stroke as a result of the encephalitis, and has been left with extensive brain injury, which has left her permanently disabled. She suffers with multi focal epilepsy, hemiplegia with her left side being weaker, hearing impairment, auditory processing disorder, communication difficulty, developmental delay and has also been diagnosed with autism. Isabel is non-verbal, but as no problem getting whatever she wants, namely chocolate milkshakes, fried egg buttys and her favourite snuggly.
Iwan had his first seizure at 8 months and it lasted 50 minutes. This became a regular, and terrible, event for him, having up to 8 prolonged seizures a day needing 'rescue medicines', as he couldn’t stop his seizures, without medical help. He was diagnosed with having Dravet Syndrome, a condition having hyper-mobility and ataxia. People with this condition are unsteady and require help getting around. Iwan has been diagnosed with Autism, common with this condition.  With totally pinch-worthy cheeks, Iwan is happy boy and loves his family. He’s super with jigsaw puzzles, enjoys baking, and loves swimming. Left up to him, he’d spend everyday at the beach, but is equally happy with his iPad or some bubbles.
Iwan had his first seizure at 8 months and it lasted 50 minutes. This became a regular, and terrible, event for him, having up to 8 prolonged seizures a day needing 'rescue medicines', as he couldn’t stop his seizures, without medical help. He was diagnosed with having Dravet Syndrome, a condition having hyper-mobility and ataxia. People with this condition are unsteady and require help getting around. Iwan has been diagnosed with Autism, common with this condition. With totally pinch-worthy cheeks, Iwan is happy boy and loves his family. He’s super with jigsaw puzzles, enjoys baking, and loves swimming. Left up to him, he’d spend everyday at the beach, but is equally happy with his iPad or some bubbles.
When Matthew was a year old, his parents were told that he had Crouzon Syndrome.  Crouzon syndrome is a genetic disorder characterized by the premature fusion of certain skull bones. This early fusion prevents the skull from growing normally and affects the shape of the head and face. Mathew is aware that his appearance is different but accepts the way he is.  He is extremely happy, energetic and has a love of all things football. His ambition is to play for Real Madrid or Manchester United but he is yet to decide which team to approach! With that lovely smile, he’s going to get his pick of the litter.
When Matthew was a year old, his parents were told that he had Crouzon Syndrome. Crouzon syndrome is a genetic disorder characterized by the premature fusion of certain skull bones. This early fusion prevents the skull from growing normally and affects the shape of the head and face. Mathew is aware that his appearance is different but accepts the way he is. He is extremely happy, energetic and has a love of all things football. His ambition is to play for Real Madrid or Manchester United but he is yet to decide which team to approach! With that lovely smile, he’s going to get his pick of the litter.
Natalia is a beautiful girl whose innocence and natural beauty can be seen in all her photos.  Very happy in life, she loves music and loves dancing.Natalia has partial trisomy 13 ,called Patau Syndrome .It is a rare condition, unfortunately 90% of babies born with trisomy 13 die by age 1. Patau's syndrome (trisomy 13) are genetic conditions caused by the presence of an extra chromosome in the body’s cells. Despite the considerable impact that Patau Syndrome has on Natalia she is a happy child who loves to spend time with her sister.
Natalia is a beautiful girl whose innocence and natural beauty can be seen in all her photos. Very happy in life, she loves music and loves dancing.Natalia has partial trisomy 13 ,called Patau Syndrome .It is a rare condition, unfortunately 90% of babies born with trisomy 13 die by age 1. Patau's syndrome (trisomy 13) are genetic conditions caused by the presence of an extra chromosome in the body’s cells. Despite the considerable impact that Patau Syndrome has on Natalia she is a happy child who loves to spend time with her sister.
Ceridwen Hugh with her son Isaac.
Ceridwen Hugh with her son Isaac.

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