Mar is a 7-year-old girl who was born with profound bilateral deafness. At 4 months of age, she began early speech therapy and at 11 months we began the surgical process to place the cochlear implant bilaterally. It was a decision that as a family cost us a lot to assess but after consulting and informing >different professionals, we made the decision to operate on the 2 implants on the same day. So, the day Mar turned one year old, the implants were activated, the best gift of her life! Some bionic ears that would serve him to access the sound world.
It was a very intense year, not easy at all, but we knew that we were not alone, we were beginning an unknown path but we were very well accompanied by the professionals of the Sant Joan de Deu Hospital, especially by Dr. Claveria, by the Creda-V, ( Educational resource center for the hearing impaired), by testimonies from other families who were in the same situation as us, by friends and family, who were always there and gave us the strength and energy we needed to be able to face a new challenge.
Every conquest Mar made was a cause for celebration, her hearing and speech evolved very successfully. Little by little, Mar adapted to the new situation and with a lot of effort, perseverance and will she achieved what she set out to do.
Until then, we did not know the cause of his deafness, but in 2019, in an ophthalmological examination, a possible retinitis pigmentosa was detected, which, associated with the congenital deafness of the Sea, was suspected of Usher syndrome type 1B. The genetic test confirmed the diagnosis and the news shocked us again, because we knew nothing about this syndrome. We started an unknown path again but this was more uncertain than just deafness.
Currently, Mar is a very happy and smiling girl, observant and sensitive. She goes to ordinary school and finds it very easy to make new friends. She loves to swim in the pool, sing and put on makeup.
We do not know how the syndrome of the Sea will evolve in the coming years, we believe in a slow progression and that the Sea will be whatever it wants to be. With some limitations but with resources that will help her when she needed them.