NOTE: May is Better Hearing and Speech Month
By Donia Shirley, Vice President of the National Family Association for Deaf-Blind and parent of Jaxson, a child who is deaf-blind.
When a baby is added to a family, invisible bonds often quickly form with others who have children the same age. For families who have children with complex support needs, that community can seem out of reach, especially when they have a child with a low incidence disability such as deaf-blindness.
A few days after our 6-week-old son Jaxson was transferred to our local children’s hospital, we started receiving diagnoses. We learned he was deaf-blind; he was profoundly Deaf and had colobomas (an eye condition that cannot be completely corrected). The medical team eventually informed us that Jaxson had CHARGE Syndrome.