After six years of battling through the challenges of PMA to bring our son into our lives, Antoine has finally arrived. However, just a few days into his life, concerns about deafness arise. The pediatrician initially attributes it to amniotic fluid in the ears, urging us not to worry. Unfortunately, two months later, the heartbreaking diagnosis is confirmed – Antoine is profoundly bilaterally deaf. Despite the pain, a glimmer of hope emerges as we learn about the possibility of cochlear implants.
As the rhythm of life settles in, and we witness Antoine’s joyful progress, a devastating blow strikes on December 6, 2023 – the revelation of Usher syndrome. The ground feels like it’s slipping from beneath me. Having previously read about this syndrome, I quickly comprehend the challenges that lie ahead. Despite overwhelming sadness and anger, we reassure our little Antoine of our love and commitment to fight alongside him. Turning to the internet for answers and hope, I find solace in the efforts of the Savesightnoweurope association and the inspiring stories of mothers, particularly Berta and Émilie. Their unwavering support provides me with the strength and courage to advocate not only for Antoine but also for all children with Usher syndrome.