A crowdfunding campaign is underway to publish a book featuring children with rare conditions, including two with WAGR 11p Deletion Syndrome.
The proposed book is the result of a photography project called Same But Different by Ceridwen Hughes. In recent years she has produced a beautiful website of words and pictures with the emphasis on the children, bringing out their personality and positivity rather than simply focusing on their conditions.
Following promotion by Aniridia Network in 2015, Faith and Mari who have WAGR were photographed and depicted on the website. They will appear in the book too, if it gets enough pledges of funding from by people like you.
The Kickstarter campaign’s goal is to fund the publishing of a large scale, hardcover, coffee table book titled, ‘Celebrating Difference – a rare disease journey’. It will consist of the children’s photos and stories on the website and many more not previously published. It aims to make people more aware of what it means to be affected by a rare disease whilst giving such people a stronger voice in the community.
“Using powerful portraits to capture the person behind the condition and sharing as many stories as possible, we can make people think and look beyond their first impression. The joy and happiness of each child shines through whilst their families discuss their own personal rare disease experience.”
Get more details and give your support at on the Celebrating Difference Kickstarter page.