copyright – Caroline Liabot
Eléanore was born on December 31, 2011 and has Rett syndrome. She lives in Normandy with her parents and two brothers.
Rett syndrome is a rare genetic disease that affects the central nervous system and mainly affects girls. It is caused by a genetic mutation at conception. There are no hereditary factors; it’s “bad luck”, as they say. Rett syndrome, discovered in 1966 by Andreas Rett, is a severe polyhandicap. Epilepsy, sleep and eating disorders, loss of skills… are all part of the picture. Some girls can walk, others cannot.
Speechless, like most girls with the syndrome, Eléanore is nonetheless expressive and full of emotion. Together with her mom, they use photography to express their emotions and strengthen the bond between them.
Through ten portraits, Audrey GUYON, Eléanore’s mother, wishes to present the key events in her daughter’s life, linked to Rett syndrome. She also wants to raise public awareness of Rett syndrome and disability in general. Ten black-and-white portraits of the first ten years of this extraordinary little girl’s life, in which joys and sorrows come together, but where life and love triumph.
The Association Française du Syndrome de Rett (French Rett Syndrome Association) has joined forces to provide information about the syndrome. Under each photograph, she explains what characterizes Rett syndrome.
Audrey GUYON has been a professional photographer since October 2008. Based in Normandy, in the Manche department, she loves to photograph life as it is.
A wedding and family photographer, she has also specialized in disability photography since 2016, through her daughter, Eléanore, who suffers from Rett syndrome.
“Living with disability has opened up my outlook on life and people.”
She produces photo reports in hospitals, specialized establishments and for associations. She also photographs families affected by disability or illness, who simply want to take family photos.
Audrey GUYON’s aim is to break taboos and show that beautiful things do exist, despite the difficulties.