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.”
The Doak Family
The Doak Family Bronwyn and Andrew’s boys, Eamon and Kealan, were diagnosed as being profoundly deaf as infants.Bronwyn and Andrew’s boys, Eamon and Kealan, were diagnosed as being profoundly deaf as infants. However, Bronwyn believed there was more going on, as Eamon...
The Cox Family
The Cox Family Vicki received confirmation that her daughter, India, had profound hearing loss when she was fifteen months old, the day before the birth of their second daughter Samira.Vicki received confirmation that her daughter, India, had profound hearing loss...
The Alderman Family
The Alderman Family Shelley and Will found out that their son, Noah, had moderate to severe hearing loss through the universal newborn screening program.Shelley and Will found out that their son, Noah, had moderate to severe hearing loss through the universal newborn...
The Carter Family
The Carter Family Oscar was diagnosed with hearing loss as a newborn and received cochlear implants at ten months old.Oscar was diagnosed with hearing loss as a newborn and received cochlear implants at ten months old. Growing up, Tina described Oscar to be a strong...
The Shepard Family
The Shepard Family After bringing their second child, Louis, home from hospital, Emily and David knew something wasn't quite right.After bringing their second child, Louis, home from hospital, Emily and David knew something wasn’t quite right. His loud, two-year-old...
UsherKids Australia is proud to be a member
and active contributor to these organisations
