Julianne and Peter have three boys: Will (7), Hugo (5) and Callan (2). Both Will and Hugo were diagnosed with deafness through the newborn hearing screening program, but it took until Hugo was two years old, for the family to learn the boys have Usher syndrome Type 2C. Julianne and Peter found the diagnostic process to be a really challenging time, as the medical professionals they saw had little information about the syndrome, leaving Julianne and Peter needing to do a lot of independent research themselves.
"We were teaching our specialists as much as they were teaching us."
However, both Julianne and Peter agree that a lot of positives came from the diagnosis. Once they knew the boys had Usher syndrome they were able to look for specific supports and found UsherKids Australia. It also meant they could commence specific therapies for Will and Hugo. This has allowed them to begin preparing for vision loss whilst the boys still have their sight.
"They're typical kids, they just don’t have typical hearing and one day they won’t have typical sight."
Will is now at school and Hugo will start school next year. They have found that day cares and schools that have experience with kids who have disabilities have been fantastic at meeting Will and Hugo’s needs.
It has also exposed the boys to kids with other disabilities who are achieving fantastic things. Julianne and Peter are now focusing on providing Will and Hugo age-appropriate information about Usher syndrome as they get older.