Rett syndrome is a rare genetic disorder of the central nervous system. It affects almost exclusively girls, occurring in one in every 10,000 female births, and is the leading genetic cause of multiple disabilities among girls in France. Worldwide, a girl is born with Rett syndrome every 80 minutes.

Caused by a mutation in the MECP2 gene on the X chromosome, it occurs spontaneously in the vast majority of cases, with no family history. It can affect any family.

For the first few months, everything seems normal. Then, between 6 and 18 months, the child gradually loses skills she had acquired: speech, the use of her hands and sometimes the ability to walk. Epilepsy, breathing problems, feeding difficulties and scoliosis are also common.

Yet what matters most remains. Although their bodies no longer do as they wish, these girls see, hear, understand and feel everything. Their eyes become their voice: with eye-gaze tablets, some learn to say yes or no, to read, to write and even to tell stories.

Rett syndrome does not destroy neurons: it disrupts how they work. Animal research has shown that the condition is reversible.

Since then, progress has accelerated. The first treatment for its symptoms was authorised in Europe in 2026, targeted treatments are in development and the first gene therapy trials are under way in the United States. No medicine can yet cure the condition, but early, intensive therapy can slow or even stop the loss of skills.

Slowing that loss, regaining independence and, one day, finding a cure: this hope has never felt so real.

In November 2026, two mothers, Chloé and Clarisse, launch a major nationwide campaign to raise awareness of Rett syndrome and accelerate research. Six girls aged 4 to 13 are the faces of the campaign: Agathe, Anastasia, Élise, Laura, Leina and Ysée.

Each poster features an intense gaze and a line: ‘When I grow up, I could have been…’ A doctor, a journalist, an astronomer, a singer. Childhood dreams that the condition gradually takes away, and that research could give back to them.

This autumn, their faces appear across France. Their eyes ask just one thing of us: to look beyond disability.

Encourage families to support one another and share rehabilitation approaches that have proven effective, both in France and abroad.

Fund therapies that are often not covered by health insurance: specialist physiotherapy, occupational therapy, music therapy and equine-assisted therapy.

Organise specialist courses led by French and international professionals, and fund training for practitioners

Raise awareness among the public and professionals, and change perceptions of the condition.

These little girls love music, stories, school, fairground rides and thrills. They laugh, they dream, they are eager to learn. We believe they deserve to be seen for who they are: children full of life, trapped in bodies that no longer respond to them.