Felix is three years old but he hasn’t all his teeth already 😉 His deafness was detected late, when he was 15 months old. Why so late? Because the ENT gave a false diagnosis when Félix was three months old. We lost a precious time there. He underwent surgery, receiving his first cochlear implant at 17 months. Three days after the activation, we get this diagnosis: “Your son will also gradually lose his sight during childhood. He has Usher syndrome type 1. What a crushing blow for us, his parents, after all the hardships related to the first diagnosis and the first hospitalization of our son. We, parents who were also expecting our second child and who did not know what life would hold for her.
What struck us was the immense loneliness in which we found ourselves, with doctors who did not know about Usher syndrome type 1. No one could explain to us the different subcategories of type 1. It was Carolien, Jackson’s mother, in the Netherlands, who gave us the information. The mutated gene is called “MYO7A” and it is Usher type 1B, the same as his son. It is thanks to her that we were able to come out of our lethargy and start to network with other families. We started to live beautiful moments with Félix again.
Sharing experiences, concerns, hopes for the future, seeking solutions together to find a treatment quickly, has therefore become our mission for the years to come.