Navigating Parenthood with Two Children with Usher Syndrome

Both of my sons, Ethan and Gavin (Morrobel) have Usher syndrome type 1, a rare genetic condition that is the most common cause of combined deafness and blindness. They were born with profound sensorineural hearing loss, are progressively losing their vision due to retinitis pigmentosa, and have severe balance issues from vestibular dysfunction.