Léa was born in December 2013. A very quiet baby, who slept a lot, never woken up by noise. At the maternity hospital at her birth, she had 3 hearing tests which each time gave no results. They told us not to worry and to come back when she was 3 months old for a more thorough hearing test.
Three months later, in a hospital not specialized in deafness, they performed an AEP (auditory evoked potential) which gave signals (truncated because the test was done while she was breastfed). “Your daughter is not deaf, she hears very well, look at the curves!
When she was 9 months old, big doubts set in. After tapping a pan with a wooden spoon while she was playing quietly, and seeing no reaction, no startle, nothing, we went to Tours for a “real” AEP. The profound deafness was confirmed. The implantation on the right side was done at 15 months. Is it an isolated deafness? Is it linked to another pathology? The appointment with the geneticist at 23 months, a blood test is done on Léa and us. We received the results two months later: Usher syndrome type 1 – MYO7A gene. At 26 months, she received her left implant.
Today Léa is 9 years old. She is in the fourth grade, in an ordinary school, without assistance. We have chosen to oralise alone! No visual aids (no Cued Speech, no Sign Language, no lip reading). More focused on AVT (Auditory Verbal Therapy). She is very bothered by light, stumbles a lot, cannot see well in the dark. She plays football, goes to the gym, bikes, rollerblades, swims… She has no limits. She understands that her eyes are fragile and that she must protect herself with a cap and glasses. We have not discussed the notion of blindness with her. We don’t consider it ourselves. Léa is very determined, she has a strong mind, she never gives up. She has a “normal” life, she has friends, she is very sociable, curious, and joyful. She needs to make more effort than a child without a disability, but never complains. Her eyes are her greatest help in understanding, apprehending and anticipating.
Our children teach us so much, make us stronger and better.