Friday, November 27, 2015

[nidokidos] Children With Rare Diseases

 

Children With Rare Diseases
 
I Photograph Children With Rare Diseases To Encourage People To Look Beyond Their Condition. I want to break down barriers and allow people to really get to know the person and not just their condition. The project I am working on at the moment specifically looks at rare diseases and is called the Rare Project.
 
 
Matthew is totally in love with football, it's his passion
 
He has Crouzon syndrome and has a cochlear implant.
 
 
Elisabeth loves to dance and has recently started ballet lessons
 
 
She was born as a twin at a gestation of 23 weeks and 4 days. She weights 1lb 4.5 ounces. After 3 months it was discovered that she had developed hydrocephalus (water on the brain) probably caused by a small brain hemorrhage.
 
 
 
Tomos dreams of the day he can play football for Manchester United

 
He has Spina Bifida.
 
 
April is a brave and determined little character, so friendly and quirky, she charms everyone who meets her

 
 
She has Hurlers Syndrome.
 
 
Grace loves everything to do with Disney, especially Mickey

 
 
She has sacral agenesis, a heart murmur, pvl and a misplaced spleen.
 
 
 
Heidi enjoys going to the cinema, eating out, putting the make-up on, having her nails painted and dressing up as Disney princesses. She absolutely adores animals and going on family days out
 
 
She has Ehlers Danlos syndrome type 3. It is 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.
 
 
 
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 forming to give a sight ratio of around 3/60 and recognized medically as severely visually impaired/blind.
 
 
 
 
The Butterfly Child
 
14-year-old Jonathan Pitre is an avid hockey fan who suffers from Epidermolysis Bullosa, one of the most painful conditions known to modern medicine. But his courage and determination to live is unlike anything in sports.
 
 
 
 

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