by Maria Sofou
The Rare Project is an inspiring photographic series that introduces children with rare medical conditions to the world through high profile exhibitions, an online gallery, social media and press articles.
The project aims to highlight the impact that rare medical conditions can have on children, while showing that behind the medical terms is a unique person -often prejudged- with its own moving story. “As awareness around a condition grows so too does acceptance. The aim of this project is to shine a light on some of these conditions and also highlight that just because a person has a disability it should not be all that people see. We want to introduce the person behind the condition.”
The Rare Project is part of the Same But Different community interest company, an initiative that uses the arts to raise awareness of disability and counteract prejudice.
“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). This early fusion prevents the skull from growing normally and affects the shape of the head and face. At 2 ½ Matthew had a cochlear implant on his right ear (not possible to do both sides due to Crouzon Syndrome). As long as he wears his implant he is now able to hear. With intensive speech therapy Matthew is making huge progress with his speech,” his mother explains. Matthew is extremely happy, energetic and loves football.
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 syndrome (trisomy 13) is a genetic condition 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.
Although unable to walk or stand, Tomos works hard to keep up with his peers at school. There are highs and lows as having Spina Bifida Myelomeningocele 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. Spina Bifida literally means ‘’split spine” and is a birth defect where there is incomplete closing of the backbone and membranes around the spinal cord. No one is certain what causes the condition. For Tomos this means paralysis from the waist down, double incontinence and Hydrocephalus which is an abnormal accumulation of cerebrospinal fluid around the brain. He has a very happy personality and a great sense of humour and loves spending time with his siblings and especially playing Fifa with his oldest brother.
Downs Syndrome in itself is not rare, however, the odds of having identical twins with the condition is around 2,000,000 to 1. Isobel and Abigail are full of life and happiness. Their characters are very different and it is a joy watching them together. At 3 years old they may have been slightly slower in achieving their milestones and their speech is limited, however, this in no way has held them back. They are really good at signing and spend hours dancing along to Singalong videos.
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. 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.
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 & horse riding which she attends through the RDA. Despite her condition she loves going to cheerleading with her friends.
For more visit www.samebutdifferentcic.org.uk/