The Schmid Family
It took until Hugo was two years old, for the family to learn the boys have Usher Syndrome Type 2c.
Julianne and Peter have three boys: Will (6), Hugo (4) 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, with professionals not always explaining complex medical terminology in the best way. The rareness of the syndrome also meant that medical professionals struggled to provide the family with useful information and support.
“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 access NDIS funding to begin specific therapies to help 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 is about to begin a year of pre-prep for hearing impaired kids. They have found that day cares and schools who 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.
“They can do just about anything they want to do. There shouldn’t be too many restrictions for them. There’s always a way around something, that if they want to do something, I’m sure that they can, there’s a way of doing it.”
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