Currently, there is no cure for this disease, but early support allows these children to progress and develop their capacities.

As a psychologist, I attach great importance to always listening to these children who do not speak but who communicate a lot. If we pay attention, they have a lot to tell us. In our teams, we take care more than anything about the well-being of these little patients and we regularly assess their pain. We are constantly putting words into what we do with them so that they are informed, participatory and less anxious.

Finally, parents’ associations are a real support for family, siblings and friends. Nice stories of friendships and mutual aid flow from it. It is a real force to lead the fight against the disease.

Céline Brodar, Clinical psychologist specializing in neuropsychology