Eleanor, my little wild one

Through ten portraits accompanied by texts, Audrey Guyon, Éléanore's mother, wishes to present the significant events in her daughter's life, linked to Rett syndrome.
She also wishes to raise awareness among the general public about Rett syndrome and, more broadly, about disability. Ten black and white portraits of these first ten years where joys and sorrows cross the life of this extraordinary little girl but where life and love triumph.

With the support of the French Rett Syndrome Association , Éléanore ma petite sauvageonne and Tel Store.

Rett syndrome

Rett syndrome is a rare genetic disorder that impairs the development of the central nervous system. This disease is diagnosed in early childhood due to confusing signs for parents of communication difficulties. A long course of support and care, after numerous observations and examinations, then begins. Family life is turned upside down. Multiple adjustments and rearrangements of daily life are necessary.

Thus Éléanore, and her parents were, and still are, supported by various services at the Caen University Hospital and Normandy medico-social services.

From the Caen University Hospital, they have known or are familiar with child psychiatry , the genetics department , ENT , ophthalmology , medical imaging and pediatrics for diagnosis, gastro-pediatrics, neuro-pediatrics , emergencies , for nutritional disorders and epilepsy, pediatric surgery to anesthesia and biology services ... All to help him grow!

Also Éléanore meets many staff and caregivers from the Caen University Hospital, and her mother, a professional photographer, has captured a multitude of moments of life, which shows us with her sensitivity, the importance of the human bonds created during care. .

We thank Éléanore, her brothers, and her parents for this sharing.

Professor Claire Dupont Medical Pediatrics department .