When I discovered that the child I was expecting was suffering from this syndrome, I looked for information everywhere but I could not find any because there was no association regarding and the medical literature only described the most serious cases and instead I discovered life beyond the disease.

Thanks to social networks I discovered other parents and affected people around the world who described the disease as something different and so after just two years after our son was born, we founded this association with the aim of becoming an international reference point.

And we succeeded.