Félix is five years old. His deafness was diagnosed late, at 15 months. Why so late? Because we received a false diagnosis from the ENT specialist when Félix was just three months old. We lost precious time. He underwent surgery at 17 months to receive his first cochlear implant. Three days after activation, we were given this verdict: “Your son will also progressively lose his sight during childhood. He has Usher Syndrome Type 1.”

This was a crushing blow for us, his parents, after all the challenges surrounding his initial diagnosis and first hospitalization. At the time, we were also expecting our second child and didn’t know what life had in store for them.

What struck us the most was the immense loneliness we felt, surrounded by doctors who didn’t know about Usher Syndrome Type 1. No one could explain the different subcategories of Type 1. It was Carolien, a mother from the Netherlands whose son Jackson also has Usher Syndrome, who gave us the information. The mutated gene is called “MYO7A,” and it’s Type 1B—the same as her son’s. Thanks to her, we were able to emerge from our confusion and begin networking with other families. We started experiencing beautiful moments with Félix again.

Félix is making great progress, which is visible week after week. He has started kindergarten and receives five weekly support sessions. We are fortunate because he can combine his schooling with the specialized deaf education program in another school. His retinal dystrophy is already quite visible in photos of his eyes. Bright sunlight and strong lights bother him a lot, and he often looks for objects in his peripheral field of vision. Félix always finds strategies and impresses us every day.

Sharing our experiences, worries, and hopes for the future, and working together to find a solution so that a treatment can be discovered quickly, has logically become our mission for the years to come.