Eleanor, my little wild one

Through ten portraits accompanied by texts, Audrey Guyon, Éléanore's mother, aims to present the defining moments in her daughter's life related to Rett syndrome.
She also hopes to raise public awareness of Rett syndrome and, more broadly, disability. Ten black and white portraits of these first ten years, filled with joys and sorrows, mark the life of this extraordinary little girl, but ultimately, 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 affects the development of the central nervous system. It is diagnosed in early childhood when parents notice communication difficulties that are perplexing. Following numerous observations and examinations, a long process of support and care begins. Family life is profoundly disrupted, requiring many adjustments and rearrangements of daily routines.

Thus Eleanor, and her parents have been, and still are, supported by various services of the University Hospital of Caen and medico-social services of Normandy.

From the University Hospital of Caen, they have known or know child psychiatry , the genetics department , ENT , ophthalmology , medical imaging and pediatrics for diagnosis, pediatric gastroenterology, pediatric neurology, emergency services , for nutritional disorders and epilepsy, pediatric surgery for neuro-orthopedic consequences and to preserve walking, and the anesthesia and biology … All to help him grow!

Eleanor also met many staff and caregivers at the Caen University Hospital, and her mother, a professional photographer, captured a multitude of moments of life, which shows us, with her sensitivity, the importance of the human connections created during care.

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

Professor Claire Dupont , Dr. Hélène Desrosières, Department of Medical Pediatrics .