Children With Rare Conditions Share Their Stories Through This Photography Project

"I use my skills as a photographer to capture the real person behind the condition..."

When UK-based photographer Ceridwen Hughes' son, Isaac, was first diagnosed with Moebius Syndrome at 8 months, she did not know very much about the rare condition. 

"Dealing with the fact your child is ill, or has a medical condition, is difficult," Hughes writes A Plus in an email. "But to find out it is rare, and that there are no specialists in that condition is only part of the story."

Hughes says people often make assumptions about Isaac's abilities because he looks slightly different due to his condition. Understandably, this made her feel quite frustrated, but it was this frustration that inspired Hughes to form a community organization called Same but Different. Same but Different aims to educate the public and raise awareness about a wide range of conditions through artwork, sharing stories, and information available on the website. 

Currently, Hughes is working on an ongoing photography series for Same but Different called Rare Project, featuring images of children with rare conditions. 


"I use my skills as a photographer to capture the real person behind the condition and then support those images with the story about the person, what they like, who they are and how their condition affects them. I want to break down barriers and allow people to really get to know the person and not just their condition."

Hughes told A Plus that many have reached out to the organization, expressing their love for the Rare Project because it has helped them learn about various conditions, cope with their own family's struggle, and/or connect with others sharing similar experiences. 

"I needed time to realize that having a daughter with a disability is a blessing," said Adelina Triesta, whose daughter has Patau Syndrome. "The project will help me to show other families in the same situation that they are not alone, and to the people who don't know too much about disability, that being kind is all that children need from us." 

Take a look at just a few of the children featured on the Rare Project. Along with each photograph is a little bit about their background, but their full stories can be found on Same but Different's website here. 


"[...]After 3 months it was discovered that she had developed hydrocephalus (water on the brain) probably caused by a small brain hemorrhage [...] 

Her situation is so unique, that even we don't know what the next day will bring.  Hydrocephalus is a condition of which the effects are different for everyone.  So we try, fail, try again, are patient, analyze, do research, try again, and keep trying to explain to people that even though you can't see it, and you won't notice it most of the time, her brain does not work the same as most other children [...]

She is a very happy 6-year-old with an infectious laughter, and a lust for life that is an inspiration to all of us..."

Read more about Elisabeth's story here. 


"Whilst in hospital Matthew was diagnosed as being deaf, but it was not until he was 12 months old that we were told he had Crouzon Syndrome.  Crouzon syndrome is a genetic disorder characterized by the premature fusion of certain skull bones (craniosynostosis) [...]

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! [...]

Whilst he has experienced many battles in his short life Matthew has not let his condition hold him back in any way.  He is such a positive boy and a huge inspiration."

Read more about Matthew's story here


"Faith is an affectionate, fun, chatty, loving, warm 14-year-old with a great sense of humor. We've always encouraged Faith, and tried our best to not treat her any differently than a 'normal' child. She attends mainstream school (with1:1 support). At a recent parents evening, her English teacher told us she has 'never met such a caring, thoughtful soul,' and another mentioned she 'brings out the best in people.'   Her school report is literally covered in 'A' for effort, we could not possibly ask for any more [...]

Faith 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 forming to give a sight ratio of around 3/60 and recognized medically as severely visually impaired / blind [...]"

Read more about Faith's story here. 


"With rare conditions you often have uncertainty.  By their very nature there are not many people who have the condition, and therefore it is not always possible to know how it will affect you or progress.  One person who lives with this uncertainty is Heidi.  She has Ehlers Danlos syndrome type 3.Heidi enjoys going to the cinema and eating out.  She loves putting make up on, having her nails painted, and dressing up as Disney princesses.  Heidi absolutely adores animals and going on family days out.  She also enjoys swimming and horse riding which she attends through the RDA. Despite her condition, she loves going to cheerleading with her friends [...]"

Read more about Heidi's story here. 


"[...] He has a very happy personality and a great sense of humor, and loves spending time with his siblings and especially playing Fifa with his oldest brother [...]

Although unable to walk or stand, Tomos works hard to keep up with his peers at school. There are highs and lows, as having hydrocephalus can make keeping up with school work tricky at times, and it's not always easy to join in football games in the playground. But his determination makes him keep on trying [...]"

Read more about Tomos' story here. 


"April is a brave and determined little character, so friendly and quirky, she charms everyone who meets her.  She forever wants to play out in the garden or at the park and loves mud and puddles and paint - anything where she can make a mess.   Like most children she enjoys singing and stories, cuddling and Cbeebies! April has two brothers, George and Eli, who she smothers with affection - whether they like it or not!   April loves getting together with her cousins and wider family and being thoroughly spoiled by everyone. 

April is a three years old girl who has, but is not defined by, mps1 (Hurlers Syndrome). This is a genetic condition which affects 1/100,000 people."

Read more about April's story here. 

Would you like to take part of the Same but Different organization?  Find out how by clicking here. You can also find news and updates on their Facebook page.  

(H/T: Bored Panda


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