My son Isaac was born with an extremely rare condition called Moebius Syndrome. He was not diagnosed until 8 months and we have had many battles to get the right level of support along the way. Dealing with the fact your child is ill or has a medical condition is difficult but to find out it is rare and that there are no specialists in that condition is only part of the story.
Because the condition means that he looks slightly different people have always made assumptions about his abilities and these frustrations led to me setting up a community organization called Same but Different. Whilst only a small number of people are affected by each rare disease collectively there are as many as 7% of the population thought to be affected by a rare disease at some point in their lives.
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. The project I am working on at the moment specifically looks at rare diseases and is called the Rare Project.
Some of the parents whose children have taken part in the rare project have told me:
“I needed time to realise that having a daughter with a disability is a blessing. 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” – Adelina Triesta, her daughter has Patau Syndrome.
“We have always liked people to know about our son’s condition. It’s OK to ask! Often we are aware of strangers looking at our son and wondering why he is in a ‘buggy’ at the age of 7, or why he has a harness like a toddler when he clearly should have outgrown this stage?! We are very supportive of the ‘Rare Project’, it is good for society to know about disabilities, to understand that these children look different or behave in a bizarre manner, but they are still children and deserve the same opportunities as other children” – Heather Hughes, mother to son with Dravet Syndrome.
I have set up a gallery online to highlight some of the people who have taken part in the Rare Project so far. This is an on-going project and as such I am looking for more people to take part. It is a great way to raise awareness of a wide range of conditions.
More info: samebutdifferentcic.org.uk
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.
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