Bruna’s diagnosis at age 9 months is Usher syndrome type 1B. It is a rare disease, a recessive inherited disease that we, her parents, had given to her. It is a disease that we had bypassed, but not our daughter.
From Denial to Pride
At the age of 36, I have less than three degrees of peripheral vision, very severe night blindness to the point where I almost can’t function without assistance, and some hearing loss that makes it necessary to wear hearing aids.