The Rare Project is designed to raise awareness of rare conditions, whilst exploring our attitudes towards those with a disability. It is designed to challenge preconceptions and to look beyond the outward appearance.
When someone acts or looks different people are sometimes too unsure how to ask questions like why is the child acting like that, what condition does your child have and may even turn away so as not to confront their feelings. This can leave the parent and person with the condition sometimes feeling isolated. I hope that during this project you will realise it is ok to ask questions and in fact that is infinitely better than looking away!
I recently had the pleasure of photographing Natalia. She is a beautiful girl whose innocence and natural beauty can be seen in all her photos. Natalia is a very happy girl ,she loves music and music is her world. In fact she loved dancing during our photo shoot, so much so we all had a little bop!
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. Average survival times for babies born alive with full trisomy 13 are two weeks or less.
Despite the considerable impact that Patau Syndrome has on Natalia she is a happy child who loves to spend time with her sister.
The Rare Project will ultimately give you the opportunity to get to know the children behind the conditions. If you have a child with a rare condition or know someone affected then please ask them to get in touch with firstname.lastname@example.org.
If you would like more information on this syndrome you can visit http://www.soft.org.uk/
Find out about some of the other children taking part in the Rare Project by clicking here.
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